hopkinschildren’s FALL 2021 THE JOHNS HOPKINS CHILDREN’S CENTER MAGAZINE S u r g eSeThceond The Draw of Pediatrics Residents and veteran How did critical care physicians share what specialist Meghan Bernier attracted them and and other staff manage the how they’ve evolved. pandemic, themselves and each other, the second time around? Photo Journal Kids giving back in surprising ways.
FamilyMatters As Always, Supporting Families “WHAT I WISH YOU KNEW” is a catch because of the pandemic. We joked that by Sue Mead, phrase used often over the last 11 years this was likely the “Last Supper.” Little Parent Advisor by parent members of the Pediatric did we know then! But COVID-19 Family Advisory Council (PFAC). We didn’t stop the council from continuing Interestingly, the realities find that message even more important to assist both staff and families. We did of living during a pandemic now, as we continue to search for effec- our best to support staff with food and are not unlike what our tive ways to support families during the snacks, while volunteering at the ware- families deal with while COVID-19 pandemic. house to help make face shields, bottle caring for a critically ill child hand sanitizers and fold reusable heavy in the hospital. Interestingly, the realities of living gowns. during a pandemic are not unlike what On Thursdays we continued our free our families deal with while caring for a As the months wore on, we soon meals for parents program, providing critically ill child in the hospital: different realized how difficult it was for only one individually packaged lunches from local circumstances, yet similar feelings. Each parent to be permitted at the bedside. restaurants. We helped to orchestrate day, we receive new insights, but often, We tried to decrease their social isolation virtual town halls from every pediatric there are no concrete answers. There’s by introducing activities like parent division, so that patients and families worry, fear, exhaustion, added expenses bingo on Tuesdays via CCTV, hoping could hear directly from our physicians and isolation. Yet, like these brave fami- to provide a little entertainment and about COVID-19, its effects and how lies, we keep pushing forward and gain distraction — not to mention gift-card to protect themselves. We also launched strength as we confront this crisis. prizes. Similarly, an artist-in-residence a food pantry in the Pediatric Intensive Child Life specialist now works with Care Unit and in Oncology to provide It was only a little more than a year ago parents on art projects to engage them grab-and-go meals and snacks, so that when, as we served our traditional Thurs- in a medium that can help them process families don’t have to leave the unit to day night meal to Children’s Center what they are going through and purchase food or to feed family at home. families, the governor held a press confer- normalize their lives (see page 60). ence to announce the closure of schools All Johns Hopkins Family Advisory Councils continue to meet monthly via Family inspiration boards, like this Zoom — with better attendance than one in the pediatric intensive care ever. We continue to advise and offer unit, help to calm parents’ worries, feedback about visitation, marketing and fears and isolation. patient education surrounding COVID- 19 and the vaccine. We have also created our own social media page for families to follow while they’re in the hospital. That way, they can receive daily updates on special virtual activities on CCTV. In the spirit of “What I wish you knew,” we continue to solicit ideas from parents to support them and their families, espe- cially during this difficult time. Please let us know your ideas, too. Thank you. HOPKINS CHILDREN’S | hopkinschildrens.org
FALL 2021 42 Organ Transplant Surgeon Betsy King The daughter of a bricklayer, King knew since childhood that she wanted to do something with her hands. Little did she D E P A R T M E N T S know it would be saving the lives of children needing new kidneys and livers. 2 Directors’ View Aiming for Health Equity F E A T U R E S T O R I E S 3 Spotlight 4 The Second Surge Pediatric Chaplain Matt Norvell This time staff faced more 16 Photo Journal daunting challenges and greater Kids Giving Back: Patients and their Fundraisers! stress. How did they do? Mat Edelson 32 Pediatric Rounds Treating Obesity Related Hypertension 22 T he Draw of Pediatrics A Sly Spinal Cord Tumor A Nursing Trifecta What attracted them to taking Bridge Builder John Campo care of children and how they’ve evolved doing so. 46 Research Roundup Karen Blum Reducing Readmissions for Nephrotic Syndrome A Game-Changer Grant for Managing MIS-C 50 People & Philanthropy Play Games, Heal Kids A Giant Impact Radiothon: The Show Goes On Cover photo: Keith Weller 60 In Memoriam FALL 2021 1
The Directors' View Hopkins Children’s is published by the Johns Hopkins Aiming for Health Children’s Center Office of Equity Communications & Public Affairs 901 S. Bond St., Suite 550 It has been quite a year. In addition to grappling with racial injustice Baltimore, MD 21231 and increasing urban unemployment and poverty — among other hopkinschildrens.org stressors — we and our patients and families have faced a pandemic 410-502-9428 that has claimed half a million lives in this country. Children have Shannon Ciconte not gotten as sick as adults, but, as Pediatric Hospital Medicine Senior Director, Division Director Eric Biondi noted this winter, “We can no Interactive Marketing longer say that children are not affected by COVID-19.” Read “The Gary Logan Second Surge” feature story in this issue (pages 4-15). Editor Helen Grafton Similarly, issues such as racial disparities have motivated us to work Molly Saint-James harder to ensure health equity for all of our patients. That means Assistant Editors promoting equal access to health care and, especially during these Cozumel Pruette, m.d. times, providing vaccines against COVID-19. Another concern Medical Editors is the need for greater awareness by our staff about unconscious Waun'Shae Blount discrimination in working with our patients and families — as well Karen Blum as each other. See our interview on implicit bias with MariaTrent, Julie Weingarden Dubin chief of the Division of Adolescent and Young Adult Medicine, and Mat Edelson her colleagues (pages 30-31). Leslie Feldman Christina Frank Being aware of how we as pediatricians communicate with our Rachel Hackam patients and their families, colleagues and staff is one trait of a Amanda Leininger superb pediatrician. Compassion, curiosity, empathy — seeing Michael E. Newman medicine through the patient’s lens — are equally vital attributes. Contributing Writers How do we support these goals? Learn what pediatricians Barry Rachel Sweeney Solomon, Hoover Adger and Nicole Shilkofski, among Graphic Designer others, have to say on the subject, in “The Draw of Pediatrics” Kathryn Dulny (pages 22-29). Keith Weller Photography An innovative mind is yet another characteristic we aspire to — Printed in the U.S.A. and remains at the heart of much of what we do here. Whether ©The Johns Hopkins University 2021 through the delicate resection of a spinal cord tumor with neurosurgeon Alan Cohen or the building of a new congenital Give us feedback heart center with cardiac surgeon Bret Mettler, cardiologist Shelby Kutty and intensivist Jamie McElrath Schwartz, Send letters to Gary Logan at we continue to advance care for children (see “Pediatric Rounds” the above address, or email pages 32-45). [email protected]. Thank you, and enjoy this issue. For more information Margaret “Maggie” Moon, M.D., M.P.H. Co-Director and Pediatrician-in-Chief, To read more on the clinical services and Johns Hopkins Children’s Center programs covered in Hopkins Children’s, visit hopkinschildrens.org. David Hackam, M.D., Ph.D. Co-Director and Surgeon-in-Chief, Johns How you can help Hopkins Children’s Center Call 410-361-6493 2 HOPKINS CHILDREN’S | hopkinschildrens.org
Spotlight Pediatric Chaplain Matt Norvell Following training, he sought a place where the pace was fast and the stakes higher. by Julie Weingarden Dubin Matt Norvell pulls into the hospital in 2007 as a chaplain resident in pediatrics, Norvell had to make such connections parking garage during the early and he was then hired as a pediatric in new ways: Walking the halls and morning and receives a page: palliative care support specialist. When making eye contact above all the masks. A young patient unexpectedly went into funding came through for a Department Comforting patients by talking by phone surgery and the mother is crying, afraid of Pediatrics chaplain, he landed the job through glass doors. Sending the entire that her child may not survive. Norvell sits following a national search. staff weekly inspirational emails to ease for hours with her in the surgical waiting anxiety. area, reminding himself this is why he In addition to supporting patients and chose to become a minister and pastoral families, Norvell tends to the spiritual and “Most of the world was being told to stay counselor. emotional health of Children’s Center staff home and health care workers were told to members: “A challenge for health workers come to work,” says Norvell. “That worry “In high school, people said I was a taking care of sick, vulnerable children, of putting their lives and their families at really good listener and that shaped me,” is there isn’t a place built into their risk layered on top of trying to teach kids he says. “A piece of my inspiration toward professional role to deal with emotions.” at home, see a sick parent and somehow professional ministry was the desire to find toilet paper, was too much.” be with people and understand their Norvell lets them know that he’s relationship with themselves, with other available when they need to talk. If the One resource for staff is the RISE people and with God.” stress they face isn’t addressed, Norvell says, (Resilience in Stressful Events) program, there may be consequences that interfere co-developed by Norvell. It provides Norvell was always drawn to the one- with their mental health and their ability emergency psychological and emotional on-one counseling of ministry, but he to do their job. first aid to employees — if something found through his early intern work that goes wrong with a patient and the staff the pace and intensity of the medical world A challenge for health member doesn’t want to talk about it with was a better fit. “When you get a call in workers taking care of sick, coworkers, the employee can talk to a peer the hospital, there’s an acute need to help vulnerable children, is there responder. someone, where in a church setting it’s isn’t a place built into their more sporadic,” says Norvell, pediatric professional role to deal “When COVID hit, RISE went from chaplain at Johns Hopkins Children’s with emotions. about four calls a week in January to 30 Center. calls a week March through May,” says “They tell me they haven’t slept because Norvell. “RISE is now in 65 hospitals Why the focus on children and their of stress,” he explains. “I say, ‘Dude, this across the country.” families? “The stakes feel a little higher is a real thing. You should pay attention working with sick kids,” he says. “Nobody to this.’” For his own emotional stability, Norvell ever says, ‘He lived a good life’ when a kid focuses on his family and hobbies like dies. It’s always a bad thing.” When the pandemic hit, however, gardening, golf and bluegrass jam sessions. “When I’m playing the banjo,” he says, “I Norvell received a Master of Divinity can immerse myself in the music and not from Duke Divinity School and a Master think about health care or COVID.” of Pastoral Counseling from Loyola University. He started at Johns Hopkins FALL 2021 3
Facing SurgetheSecond BY MAT EDELSON 4 HOPKINS CHILDREN’S | hopkinschildrens.org
Pediatric infectious disease specialists Anna Sick-Samuels and Aaron Milstone. “SUDDENLY WE WERE WORKING 100-HOUR WEEKS FOR SIX STRAIGHT WEEKS IN THE COMMAND CENTER, BECAUSE IN THE FIRST WAVE PROVIDERS WERE SCARED. THERE WAS SO MUCH TO FIGURE OUT ON THE FLY—THINGS LIKE HOW TO TEST PATIENTS COMING INTO THE HOSPITAL, WHAT KIND OF PPE WORKED BEST, ANYTHING AND EVERYTHING REGARDING INFECTION SPREAD.” — AARON MILSTONE FALL 2021 5
This was definitively not a drill. In early March 2020, the newly formed dren’s Center to remain open and care into the pandemic’s Incident Command Center at Johns for patients, staff and the community as vortex like wind being Hopkins Children’s Center (JHCC) the second surge of COVID-19 engulfs sucked through a jet engine. convened for the first time. After nearly Baltimore. This dynamic tension between sharing three months of rumors, chatter and precious resources serving the highly terrifying news reports, SARS-CoV-2, How does one describe the impacted adult population while still the virus that causes COVID-19, had unprecedented 18 months carrying out the Children’s Center’s made the 7,573-mile journey from since the pandemic assaulted mission to safely treat children is the Wuhan, China, to Johns Hopkins’ Charm City? For the staff — and we continuing through-line in this tale. It front door. talked with more than 20 for this story is a story of great self-sacrifice, a shelv- — there’s the daily dichotomy of liv- ing of egos, and a marshaling of talents The mood in the Command Center ing inside a plague of seemingly bibli- and skills that have so far met — and was concern tinged with fear; the scene, cal proportions. They’ve been awed by perhaps even stayed a step ahead — of frankly, a bit chaotic. Some in the their fellow staff members, describing the greatest medical emergency Johns overcrowded small room wore masks, them as “heroic,” “brilliant,” “creative” Hopkins has ever faced. others did not. Open platters of food and “innovative.” But individually, were scattered about the conference they admit to feeling “frustrated,” “ex- On a functional level, there have table, as if this was just another catered hausted,” “soul-crushed” and “help- been huge alterations in day-to-day meeting. With little official guidance less,” from the experience. operations. Part of the pediatric inten- yet on what to do — this was before sive care unit (PICU) was retrofitted the words “physical distancing” and Even as vaccines reach outstretched to admit and care for adult patients “mask” became as ubiquitous as “um” arms across Johns Hopkins, the fin- with COVID-19. Necessary nega- — everyone was ad-libbing, and no one ish line remains hazy. Virus variants tive pressure rooms for patients with was pleased. Said one participant, “We muddy the view as death tolls climb COVID-19 were built nearly over- were all looking at each other like ‘this well past the half-million mark na- night. Telemedicine (Zoom-like video doesn’t feel OK.’” tionally, with more than 8,000 dead outpatient consults with patients and in Maryland. Fortunately, childhood families in their homes) soared. A But from this initial tumult emerged deaths make up a very small percentage scarce resources allocation group was a coordinated effort unprecedented in of that number, but that doesn’t mean convened to ensure all staff had proper the Children’s Center’s history. Hun- pediatric staff have sat on the sidelines PPE (personal protective equipment). dreds of faculty and staff united to solve during the crisis. Child Life expanded from the bed- daily crises. In a time calling for the ul- side to the car side, developing coping timate in fluidity and flow, the can-do Far from it. Because of its physical plans that nurses could use to comfort spirit that has so often permeated the and institutional connection to the anxious children as they got tested for walls of Johns Hopkins led to a “get ’er adult side of Johns Hopkins Medicine, coronavirus in drive-up sites. Work done, titles-be-damned” mentality. the Children’s Center has been pulled schedules were revamped when the And it paved the way for the Chil- 6 HOPKINS CHILDREN’S | hopkinschildrens.org
Rebecca Trexler, (left), project administrator for patient- and family- centered care, and pediatric nurse Cathy Garger went beyond their traditional roles to communicate “need to know” COVID-care updates to staff. governor banned elective procedures Yet those same distancing policies, daily to make decisions,” says Maggie for roughly two months beginning last and the social isolation they impose, are Moon, co-director of Johns Hopkins March. Even pediatric medical resi- difficult to bear for months on end for Children’s Center, “but a big part was dents felt the impact, deploying into patients, families and staff. Not surpris- informing everybody affected by those adult care across Johns Hopkins. In the ingly, calls from staff to Johns Hopkins decisions to help them anticipate and Children’s Center, overseeing it all was RISE (Resilience in Stressful Events) feel engaged and confident about what’s its Incident Command Center, which teams have soared, as has outreach to coming next as much as anyone else.” met daily for weeks, coordinating the pastoral care and other psychological crisis and pumping out a steady stream services. Between in-person and Zoom at- of science-solid information to an un- tendees, several dozen people often derstandably uneasy staff. In other words, everyone’s helping, took part in the daily briefings, includ- and everyone’s hurting. ing division heads, charge nurses and And make no mistake — keeping top administrators. Even for those the staff safe and healthy, both physi- It’s not an overstatement to with previous disaster training, this cally and psychologically, has been as say that in the first days of the pan- was suddenly the real deal unpredict- daunting as maintaining premium stan- demic, people were desperate for ably unfolding in real time. As one fac- dards of patient care. In the first surge, information. With treatment and PPE ulty member put it, “COVID was like nearly 100 staff members tested positive protocols and the Centers for Disease playing whack-a-mole, where stuff just for COVID-19, but that number has Control and Prevention recommenda- pops up and we all had to jump on it.” dropped drastically as the Children’s tions changing sometimes hourly, get- Each day’s briefing included a COVID Center successfully created a “bubble” ting up-to-the-minute info to the front case and PPE count, along with robust environment. By instituting a one- lines was critical. That task fell to the discussions of how to put out the latest parent visitor policy, and urging non- JHCC Incident Command Center. “A COVID-related brush fires. Recording front-line staff to work at home when crisis situation requires an all-hands- and distilling all that conversation into possible, the Children’s Center feels on-deck community where everybody easily digestible all-staff emails and texts like an awfully quiet but far safer place has a voice, and the Incident Com- fell to Cathy Garger and Rebecca these days, at least when it comes to mand Center got people together Trexler. As was common with many COVID spread. staff during the crisis, Garger, a pedi- FALL 2021 7
“IT’S A MOMENT IN TIME WHEN A GROUP OF PEOPLE IDENTIFY A SUDDENLY EMERGING PROBLEM AND RAPIDLY COMBINE BRAINPOWER TO FREELANCE A SOLUTION. TEAMING THRIVES ON TRUSTING YOUR TEAMMATES AND IMPLEMENTING RAPID ITERATIONS.” –DANIEL HINDMAN atric nurse with disaster-coordinating starting asymptomatic COVID testing calls “teaming,” borrowed from the experience, and Trexler, the project for hospitalized patients every seven book Teaming by Amy Edmonson. administrator for patient- and family- days of their stay, and another Power- centered care, went beyond their job Point featuring pediatric infectious dis- “It’s a moment in time when a group descriptions to take on these crucial ease specialist Anna Sick-Samuels of people identify a suddenly emerging communications duties. Trexler’s daily explaining the workings and studies of problem and rapidly combine brain- email (it’s now weekly) covered the the then-just-approved Pfizer vaccine. power to freelance a solution,” says basics for staff: negative pressure room Hindman, who practices mostly at bed availability, ICU COVID cases, This regular messaging is helping to Johns Hopkins Bayview Medical Cen- the latest advice from the Hospital keep everyone on the same page, says ter. “Teaming thrives on trusting your Epidemiology and Infection Control Moon. “The feedback I was getting teammates, and implementing rapid (HEIC) team, hospital COVID-care from staff is that, if the rules change iterations. And when you don’t have resources and contact info to reach the from yesterday to today, it’s unjustifi- an option to wait around, you decide Command Center. “We were seek- able to ask people to work in the dark; to do something knowing it won’t be ing consistent messaging and narrow- the staff all said, ‘we’ll do anything we perfect, (then) figure out what doesn’t ing the info to ‘here’s what you need need to do to make this right, but we work, then try it again with some modi- to know that’s happening during the need to know what to do, and we need fication and keep doing that.” surge,’” says Trexler. to know why.’” This idea of teaming spread through In time, Trexler’s notes, vetted by There’s an old saying, perhaps pediatric staff nearly as fast as the pan- Moon, have become a one-stop CO- apocryphal, that in crisis comes demic. It’s a delicate balance. Ethi- VID-awareness shop cutting through opportunity. The COVID cri- cally, one can’t improvise to the point the numbing amount of emails com- sis stripped Hopkins’ bureaucracy to that care is compromised. But in the mon to any staff member’s inbox. By the core. There were simply too many absence of established protocols, some- example, Trexler’s Dec. 14, 2020, problems requiring too many solutions times a best guess is the best (and only) all-staff email contained the JHCC too quickly for the process to be slowed way to go. For Hindman, that meant Incident Command Center summary, by traditional medically conservative handwriting a negative-pressure-care along with a PowerPoint explaining chain of command. What occurred is protocol for Johns Hopkins Bayview why Johns Hopkins Medicine was what pediatrician Daniel Hindman the night the governor announced the first COVID cases reached Maryland. 8 HOPKINS CHILDREN’S | hopkinschildrens.org
For Residents, Uncharted Waters Nobody enters a residency expecting to confront a pan- really strong team where no one cared “We created a biodome and had demic, but that’s exactly what that I was a pediatrician; I always felt to bring in all this adult equipment; happened to Zach Claudio and I had someone who could answer my new beds, pumps, supplies, lots of Shira Ziegler. Claudio, a third-year questions, and I never felt like I was resident, remembers the pandemic’s doing anything unsafe.” logistics for dealing with patients onset as being “in unchartered waters,” five times larger than who we’re what with anxieties of how the disease For Ziegler, a third-year pediatrics spread, whether children would be af- and genetics resident with an M.D./ used to taking care of.” fected, and if residents would get sick Ph.D., COVID ground her research to – shira ziegler en masse. Claudio says that unease was a sudden halt. “They needed (clinical) quelled somewhat “as Hopkins had hands, and though it’s a little cliché, I been manufacturing some of their own had this very inner desire to help,” says PPE, so we knew we had adequate Ziegler, who volunteered to work in supplies versus some friends I knew the part of the PICU redesigned for who worked in community hospitals.” adult patients with COVID. “We cre- ated a biodome and had to bring in Claudio was redeployed into an all this adult equipment; new beds, adult ICU. His last adult care experi- pumps, supplies, lots of logistics for ence came in medical school, and he dealing with patients five times larger admits, “I was nervous at first, because than who we’re used to taking care of,” a lot of the co-morbidities these adults says Ziegler. “But our team rallied and had I hadn’t seen in quite some time, just came together, focusing on giving being a pediatric resident. But we had a them the best care during a novel virus and circumstances nobody could have expected.” For pediatric anesthesiologist and Koka also handled redeployment of the becoming unstable, while other young- critical care specialists Jamie McEl- numerous pediatric anesthesiologists sters faced disrupting their scheduled rath Schwartz and Rahul Koka, it who volunteered to work in other adult routine childhood vaccines. meant literally taking down walls and side departments to meet the crisis. reorganizing staff. The situation might have become “We went from a complete bureau- untenable, if not for the efforts of pe- With the adult side of the hospital cracy and not being able to change a diatrician Helen Hughes and pediat- getting slammed by COVID, Schwartz, lightbulb without input from nine dif- ric cardiologist and Chief Informatics who is division chief of pediatric criti- ferent departments, to building seven Officer Philip Spevak. Hughes had cal care medicine, worked with build- ICU beds in three days,” recalls Koka. independently started a telemedicine ing operations and pediatric leadership “That’s amazing, and I’m proud of our pilot a few years earlier, serving a rural to quickly create new adult ICU beds ability to become agile overnight.” Maryland community (Talbot County) within the PICU. Koka’s role, as the so they wouldn’t have the long com- anesthetic director of the daily flow That ability was sorely tested in the mute to Baltimore for routine care. within the pediatric operating rooms, wake of the elective surgery shutdown, Her small outreach, roughly 10 cases, was to work with Schwartz’s team to as there was an immediate ripple effect along with a few scattered cases in pe- ensure the safety of all providers and on the Children’s Center. Many par- diatric cardiology and other special- patients who required emergency and ents canceled pediatric visits, fearing ties, accounted for all of the Children’s trauma surgeries, which were still al- that Johns Hopkins, like many hospi- Center’s telemedicine cases. But when lowed after elective surgeries were tals, was a COVID hot spot. From a COVID hit, Hughes began mentor- temporarily banned by Maryland Gov. care viewpoint, this belief had poten- ing other faculty to get them comfort- Larry Hogan in early March 2020. tially dire consequences. Children with able with providing telemedicine care. controlled chronic conditions risked FALL 2021 9
Hughes, Spevak and Senior Business cialists and nutritionists into a patient’s outpatient Harriet Lane Clinic, faculty Intelligence Analyst Muhammad Is- room, “Now we have our team sitting have had a good response reaching out mail partnered with the institution’s in a conference room, and we have only to East Baltimore residents and con- Office of Telemedicine to streamline one or two people walk around the pa- vincing them that it’s safe to bring their the process so patients could access tient with an iPad for everyone else to children back in for well-care visits and telemedicine video calls with just a few see and hear,” says Eric Biondi, di- scheduled vaccines. clicks on their MyChart account. rector of pediatric hospital medicine. “We’re still ‘rounding’ with the whole If the story were to stop right here, The results have been nothing short team, and honestly, it’s increased our one might assume all was humming of astounding. “By May and June, we efficiency quite a bit. I don’t really want along well at the Children’s Center. averaged over 4,000 telemedicine video to go back to the old way of doing it.” visits per month, accounting for about But that’s not the case. Just like nearly 60% of our total case volume,” says There have been other innovations all front-line workers, mental health Hughes, who was promoted to assis- as well. Throughout the second surge, issues facing Children’s Center staff tant medical director for Johns Hop- as care protocols for adults became were palpable. “At first, it was easier to kins Medicine’s Office of Telemedicine standardized, the Children’s Center recognize the emotional toll because it on July 1, 2020. pitched in by creating non-ICU space was based on stress and fear,” of CO- for recovering adult patients. They also VID’s communicability and lethality, That confidence level in using video found they were able to treat multisys- says pediatric epidemiologist Aaron has spread to the inpatient service as tem inflammatory syndrome in chil- Milstone. well. With COVID protocols demand- dren (MIS-C), a rare and terrifying ing the fewest people possible by the disease linked to COVID. Tragically, In the second surge, that fear has bedside, telemedicine has changed tra- one child died from MIS-C last May, given way to an unrelenting funk. “The ditional patient rounds for perhaps the but since then, the Children’s Center number of calls to our RISE teams first time in a century. Instead of simul- has successfully cared for more than 30 has actually decreased (from the first taneously jamming residents, fellows, patients with MIS-C. And over at the surge) says epidemiologist and surgeon attendings, students, Child Life spe- Albert Wu, who directs RISE. “I think people are just getting discour- “WE WENT FROM A COMPLETE BUREAUCRACY AND NOT BEING ABLE TO CHANGE A LIGHTBULB WITHOUT INPUT FROM NINE DIFFERENT DEPARTMENTS, TO BUILDING SEVEN ICU BEDS IN THREE DAYS. THAT’S AMAZING, AND I’M PROUD OF OUR ABILITY TO BECOME AGILE OVERNIGHT.” –RAHUL KOKA 10 HOPKINS CHILDREN’S | hopkinschildrens.org
Nurses: The Soldiers in the Battle Senior Director of Pediatric Nurs- top-notch care. “I was so proud of that cal quality officer and otolaryngologist ing Dawn Luzetsky understands partnership, because it was truly the Emily Boss. “I felt like there was no the stress front-line workers have voice of the pediatric front line saying, nurse not utilized, redeployed every- felt during the pandemic. Her job has ‘we want to help,’ and leadership heard where, such as our testing sites. It was been to quell that anxiety wherever she them,” says Luzetsky. a massive effort on their parts, and so I can. When nurses were asked to go to feel we can’t thank our nurses enough the adult side of the hospital to provide Just staying employed was another for being the soldiers in this battle.” overflow care, they were torn; they major concern for nurses. Inpatient wanted to help, but preferred to do it cases plummeted when the governor in a familiar location. So Luzetsky and banned elective surgeries in March other pediatric administrators lobbied 2020 for two months, and outpatient hospital leadership for a new unit within visits dropped precipitously as well. But the pediatric intensive care unit (PICU) between some early retirements and that could handle adults with COVID. creative scheduling, Luzetsky and Assis- In essence, a new team was created; tant Director of Pediatric Nursing Lisa PICU nurses on their home turf work- Fratino have kept nurses working and ing side by side with a medical intensive their paychecks rolling, and their efforts care unit (MICU) adult intensivist and didn’t go unnoticed. a MICU nurse consultant to provide “The nurses are really the heroes of this pandemic,” says former chief surgi- “The nurses are really the heroes of this pandemic. I felt like there was no nurse not utilized, redeployed everywhere, such as our testing sites. It was a massive effort on their parts, and so I feel we can’t thank our nurses enough for being the soldiers in this battle.” -former chief surgical quality officer emily boss aged. Even when we do respond to a patients and staff. By example, Child visiting restriction meant parents were call, more people are silent; they’re just Life has long had a closed-circuit TV rarely in the room together with their emotionally and physically fatigued.” channel for children. With COVID child until the very end. infection prevention efforts eliminat- Still, RISE and other staff commit- ing play visits with siblings and friends, Still, Kowalski was determined to re- ted to offering psychological help have Child Life has tried filling that void by main that constant reassurance in these done their best to keep the demons at rapidly expanding live programming to parents’ lives, even if she is now often bay. Carisa Parrish, who co-directs five days a week, broadcasting enter- physically off-site to keep patients and pediatric medical psychology, launched taining and educational shows for kids their families safe. “I’ve been able to do an initiative for employees dealing with eight hours a day. a lot of teleministering this year, and I home-schooling challenges. She admits think it’s actually been very effective,” it’s not always an easy sell. “For many Similarly, limited parental visitation she says. “It was a natural segue, re- people, prioritizing their mental health has affected the neonatal intensive care ally, because I’m already working with is the last thing they do after they have unit. Consider that one of the most a lot of outpatient pregnant moms in covered every other priority, regardless stressful events for parents and staff is the perinatal program. It’s always been of the positive influence it might make dealing with a terminally ill baby; in re- easy for me to text a mom and say, ‘I’m for them,” she says. sponse, Reverend Kat Kowalski had thinking about you,’ and then I can previously created a perinatal palliative come in and provide in-person sup- And yet there are breakthroughs, care program, helping parents from port during really tough times, hav- both big and small. Johns Hopkins, un- when they first receive pre-term news ing already established a relationship like many institutions, deemed Child about their baby’s condition through (through teleministry).” Life and Pastoral Care staff as essen- end-of-life care. But when COVID hit, tial workers, which greatly benefited Kowalski adds that staff members FALL 2021 11
“FOR MANY PEOPLE, PRIORITIZING THEIR MENTAL HEALTH IS THE LAST THING THEY DO AFTER THEY HAVE COVERED EVERY OTHER PRIORITY, REGARDLESS OF THE POSITIVE INFLUENCE IT MIGHT MAKE FOR THEM.” –CARISA PARRISH have also been reaching out to her in MESH — protecting our staff’s mental, ship doesn’t expect that there will be increased numbers throughout the emotional and spiritual health.” additional elective procedures or clini- pandemic. “There was a huge uptick cal shutdowns. There’s also a sense that in prayer requests. Whether it was ‘My So where, exactly, does the many of the initiatives (such as tele- grandfather has COVID and I’m really Children’s Center stand as it medicine) implemented throughout worried about him,’ or ‘I’m pregnant endures this second surge? It’s the pandemic will become a permanent and I’m afraid to be at work’ … vari- tempting to think that as vaccination part of clinical care. ous things people would send me, and rates rise across Johns Hopkins (the in- it was reaching out in a different way stitution has been lauded for the fair- But in the meantime, many staff for help.” ness with which they’ve disseminated members believe there’s still a psycho- vaccines to front-line workers), the logical toll to be paid, a shock that may COVID’s greatest long-term institu- pandemic will eventually recede into set in when the pandemic has suppos- tional impact may be that the psycho- memory, overtaken by whatever is the edly passed. Call it pandemic PTSD. logical resources available around Johns “new normal.” And indeed, that may Some have already succumbed, retir- Hopkins are working together in new eventually happen; barring some un- ing or resigning when possible, calling ways. “We’ve coordinated for the first foreseen circumstance like the spread in sick for days or weeks on end when time very closely with the other help- of a new, uncontrolled variant, leader- that’s not an option. ing services at the hospital,” says RISE’s Albert Wu, pointing to programs avail- “There’s a mental health tsunami able to all Children’s Center staff. These coming at us, and it’s tough to know include the Healthy at Hopkins initia- tive as well as outpatient psychiatric ser- “WE KNOW WHAT WE’RE DOING NOW; IT’S NOT vices, which brought back retired and THE SAME PANIC SITUATION AS DURING THE FIRST semiretired staff to handle the mental health crisis. “As an institution, I think SURGE. YES, IT’S A BURDEN, BUT WE ARE CALM there’s a new appreciation for staff resil- NOW, WE UNDERSTAND IT, AND WE’RE CAPABLE iency and their ability to execute their mission,” says Wu. “Our leadership OF A VERY NIMBLE RESPONSE.” has really embraced the services we call –MAGGIE MOON 12 HOPKINS CHILDREN’S | hopkinschildrens.org
when it’s going to hit,” says Parrish. ter Surgeon-in-Chief David Hackam, It should, at least, be a more manage- “It’ll be when people can actually un- who notes that while the Children’s able lift, thanks to what the Children’s clench and think about what they went Center ceased elective surgeries early Center has learned over the past year- through, the losses. There’s going to be in the pandemic, its need to perform plus. The JHCC Incident Command a lot of PTSD and depression. It’s not emergency surgery, especially in new- Center is still convening and commu- surprising; people have been operating borns, never slowed down significantly. nicating, although virtually now, ex- on hypervigilance 12 hours a day for panding the content of its Friday email so long.” “Multiple teams operating in space- summary and Wednesday Zoom up- suit-like, battery-powered protective date. “We know what we’re doing now; As with all wars, pandemics do end, gear came together and showed an in- it’s not the same panic situation as dur- whether it’s after this second surge or credible amount of creativity, flexibil- ing the first surge,” says Maggie Moon. additional aftershocks. Either way, ity and expertise in providing complex “Yes, it’s a burden, but we are calm there’s the sense that the Children’s pediatric care,” says Hackam. Compar- now, we understand it, and we’re ca- Center will come out of this a better ing the second surge with a marathon, pable of a very nimble response.” institution, even more deft and with far he adds, “We will get through this to- greater resilience than anybody could gether, and those who are struggling, have expected or asked for. That’s al- the rest of us will pick them up — and ready happening, says Children’s Cen- we will carry them forward.” Infection Control: 100-Hour Weeks on the Fly It’s rare that infectious disease spe- like being a traffic cop. You’re trying to more PPE, more testing.” cialists are a hospital’s most sought- protect people, but you’re unpopular,” Now with COVID care becoming out physicians, but COVID-19 has says Milstone. spotlighted the work of faculty such more routine in the second surge, Mil- as epidemiologist Aaron Milstone. That all changed when COVID hit. stone worries that, even with vaccina- A member of the Children’s Center “Suddenly we were working 100-hour tions, staff are letting down their guard. Hospital Epidemiology and Infection weeks for six straight weeks in the “We’re beginning to get that resent- Control (HEIC) team, Milstone, along Command Center, because in the first ment again,” regarding their infection- with Lisa Maragakis, Anna Sick- wave providers were scared,” says Mil- protection advice. “This is not the time Samuels, Taylor McIlquham and stone. “There was so much to figure to be complacent. This is when it mat- other HEIC members were the go-to out on the fly—things like how to test ters most.” consortium for keeping hospital staff patients coming into the hospital, what and patients COVID-safe. kind of PPE worked best, anything and “We're beginning to get that everything regarding infection spread.” resentment again. This is not the For Milstone, suddenly being high profile and in demand was a career Millstone adds, “Usually, we’re told time to be complacent. This is first. He agrees that, in normal times, we’re doing too much (regarding nor- when it matters most.” infectious disease docs are often seen mal infection protocols),” says Milstone. – aaron milstone as a bit of a pain in the neck, always “But in the beginning of the pandemic, reminding people of basic hygiene. “It’s we ironically got criticized for not being conservative enough; people wanted FALL 2021 13
In the pediatric intensive care unit, from left, Meghan Bernier, Amanda Levin and Katherine Hoops. Battling Multisystem Inflammatory Disease BY GARY LOGAN After a year in the trenches an outside hospital or our transport admit MIS-C patients, agrees: “In the facing the pandemic’s most team about a patient with certain signs beginning, so many patients came in lethal threat to children, and symptoms and can say with pretty with vague symptoms, really sick and intensivists cite significant significant acumen this child has MIS-C we weren’t sure why, or seemed to gains in diagnosing and until proven otherwise.” manifest MIS-C with a predilection for treating this new disease — one or two organs involved as the pri- and saving lives. Many children with MIS-C, Bernier ex- mary problem. Early on, and even now, plains, typically present with abdominal people are not always recognizing that Following the arrival of the coronavi- pain, difficulty breathing, fevers, gastro- it might be MIS-C, even though we’re rus in early 2020, a new mysterious intestinal issues, inflammation, neuro- getting more and more savvy. We see and serious — and in some cases, logic manifestations such as seizures, and the whole gamut.” deadly — related disease appeared. skin rashes — all signs and symptoms Called multisystem inflammatory syn- that can also mimic many other diseases. Further complicating diagnosis and drome in children (MIS-C), its symp- treatment, however, is how quickly toms initially confounded diagnosis and “What makes MIS-C such a chal- these intensivists have seen patients de- treatment by critical care intensivists like lenging diagnosis is that it has so much cline due to a tsunami of inflammation Meghan Bernier — but not so much in common with other clinical syn- attacking multiple organ systems. today. dromes that we see, like sepsis or even a GI illness,” says intensivist Katherine “Rapid diagnosis and rapid initiation “Back in May and June 2020 we were Hoops. of treatment is really important be- struggling with how to treat these pa- cause kids can get very ill very fast,” says tients and what protocol to use,” says On the other hand, Hoops adds, the Hoops. “They may have progressive Bernier. “Now, we’re 12 months into signs can be really subtle — a challenge multisystem failure with heart failure, MIS-C and have developed a lot of ex- for families and clinicians to see the for- respiratory failure needing mechanical perience. Today I can hear a story from est through the trees. ventilation, and kidney failure needing dialysis.” “It looks like a lot of things but the ef- fects can be devastating,” says Hoops. Adds Bernier, “They can go from walking into the ED to needing life sup- Intensivist Amanda Levin, who leads one of two PICU teams that 14 HOPKINS CHILDREN’S | hopkinschildrens.org
port within hours.” “you have to go with your gut instinct “I was drawn to the PICU Initially, Hoops says, there was a lot and your best idea of what is going on because I like caring for and with the child.” thinking about the whole child of fear among health professionals about and the interaction of all of how to respond to MIS-C. At the same To help fill in any holes in care — like the body’s systems. I love our time, she adds, intensivists do not like to an unrelenting fast heart rate that despite work caring for critically ill be put on their heels, which prompted fluid or antipyretics cannot be brought and injured children — they an aggressive fast-paced learning pro- down — they reach out to their subspe- challenge us all to be our best.” cess in the PICU to work collaboratively cialist colleagues in cardiology and rheu- to understand how MIS-C presented matology, among other disciplines, for – katherine hoops and what treatments could best tame it. speedy remedies and input on workup, They have seen enough cases to always possible causes and treatment. Collabo- to their baseline level of functioning in have a high index of suspicion for MIS-C ration and communication, stresses Ber- a week, a month, a year. However, we if a critically ill child comes in with symp- nier, are essential. are encouraged that kids are leaving toms consistent with sepsis. the ICU faster and responding to those “We’re still generalists in the ICU — therapies.” In addition, garnering 12 months of we can do 80% to 90% of the work, but experience encountering the signs and we need the help of our specialists to So, the learning curve continues? symptoms of MIS-C, they have built refine the last 10% to think of presen- “Oh sure, we’re still refining these — seemingly brick by brick with each tations and diseases and workup we algorithms as we learn about new patient they’ve seen or case they’ve re- hadn’t thought of,” says Bernier. therapies shown to be effective by our viewed — a diagnostic and treatment colleagues here at Johns Hopkins and algorithm with their pediatric subspecial- Hoops agrees: “Through this process around the world,” says Hoops. “Our ist colleagues in cardiology, hematology, we’ve been grateful for a lot of collabor- practice is constantly evolving with the infectious disease and rheumatology. As ative work from a multidisciplinary team evidence — that is how we in critical cardiac and respiratory functions are the to better understand the disease pro- care manage anything.” highest priority concerns in their proto- cess and also to develop diagnostic and Managing MIS-C, the intensivists con- col, the intensivists adhere to the ABC treatment protocols so we can rapidly clude, is not by any means easy work. formula — airway, breathing, circula- identify new cases and quickly intervene The alarm-bell, all-hands-on-deck tion — they’ve been trained to follow to give our patients the best evidence- moments when everybody swoops in for life-threatening conditions. based therapies.” to quickly reverse the inflammation and potentially save a life is both exciting and “Our main role is to help stabilize the One such proven targeted therapy rewarding. But not all patients survive, critical functions of the body, to make is intravenous immune globulin (IVIG), which takes an intense toll on the team sure the child’s blood pressure is staying which Bernier describes as applying members as well, as they see firsthand stable, the heart rates and function are white noise to the immune system: “It’s the struggles and distress families face — working appropriately, and the patient is amazing to watch this listless child lying which they also face. breathing and exchanging air acceptably in bed febrile and tachycardic, then get The rewards they cite are seeing a with whatever medicines and interven- the infusion of IVIG to quiet the im- child turnaround following treatment, in tions are needed,” says Bernier. mune system, and six to 10 hours later some cases dramatically, and getting to that child has perked up and is playing in know a patient and the family at the bed- This stabilizing step relies on a team of the parent’s lap or walking around the side or on twice-daily, family-centered faculty physicians, fellows, residents and room. The parents are like, ‘I have my rounds. They also cite intrinsic rewards. nurse practitioners — a tailored MIS-C baby back.’” “I was drawn to the PICU because I group of specialists within the PICU — like caring for and thinking about the working 24/7 to constantly evaluate and That, however, has not and will not whole child and the interaction of all of initiate therapies to prevent worsening always be the case, says Hoops, noting the body’s systems,” says Hoops. “I love of illness. Meanwhile, at times because that each child’s recovery is different: our work caring for critically ill and in- time is of the essence, Bernier adds, “When you see a child in the PICU, it’s jured children — they challenge us all to hard to predict if they’re going to return be our best.” FALL 2021 15
PHOTO JOURNAL KIDS GBIAV ICNKG IN SURPRISING WAYS Most children, teens or parents never imagine finding themselves at Johns Hopkins Children’s Center. Whether for a broken bone, a cancer diagnosis or a chronic illness, patients, families and friends alike are afraid of the unknown and look to their care team for answers. For many, the care providers become like family, and the hospital feels like a second home. This connection extends even deeper for some who decide to give back to Johns Hopkins to show their gratitude. Some people who don’t visit the Children’s Center firsthand, but are touched by the experience of their family and friends, feel inspired to contribute, as well. Meet five patients and friends of the Children’s Center who, through their compassion and resiliency, provide invaluable resources to help kids and teens like them. PHOTOGRAPHY BY KATHRYN DULNY TEXT BY AMANDA LEININGER 16 HOPKINS CHILDREN’S | hopkinschildrens.org
JULIA ALEXANDER, 14 Grade II Ependymoma Diagnosed with a brain tumor at age 8, Julia has undergone three brain surgeries, five minor surgeries, eight rounds of chemotherapy and two months of radiation at the Children’s Center. Julia and the Sparklettes regularly participate in Team Hopkins Kids during the Baltimore Running Festival, the Children’s Center’s Radiothon, and Baltimore Boogie dance marathon. The performances raise funds for Child Life services and other programs that provide fun play opportunities for kids in the hospital. “\"Johns Hopkins means so much to me and my family,” Julia says. “They saved my life. Miss Mollie is my Child Life specialist, and she makes my time at the hospital as enjoyable as it can be. Because of her, I am looking into being a Child Life specialist or an art therapist.\" FALL 2021 17
TEDDY MOSHER, 14 Traumatic Injury, Commotio Cordis 14-year-old Teddy, a goalie, was struck in the chest by a shot on goal during a lacrosse tournament. The impact triggered a disruption in the rhythm of his heart, caus- ing it to stop, and Teddy collapsed on the field. After follow-up care at the Children’s Center, he was playing lacrosse again within weeks. Today he is happily “back in the cage” with the Looney’s Lacrosse Club, and he plans to play at Loyola Blakefield in Towson, Maryland next year as a freshman. Teddy passionately advocates for player safety, and promotes use of new required chest protec- tors through social media. He also designed a wristband that reads “HeartStrong” on one side and “#Looneys2025” on the other side, and he donates all proceeds from their sale to support pediatric cardiology at the Children’s Center. “ \"I want to raise awareness for what happened to me and for all athletes to wear the proper equipment,” Teddy says. “I just want to make sure that nothing like this happens to anyone else.\" 18 HOPKINS CHILDREN’S | hopkinschildrens.org
HANNAH VINITSKY, 14 E. Coli Poisoning, Kidney Disease At 4-years-old, Hannah was admitted to the Children’s Center with E. coli poisoning. In addition to dehydration, she suffered severe kidney damage. Hannah underwent two surgeries and three blood transfusions at the Children’s Center, and she is now regularly seen there for kidney disease caused by the E. coli poisoning. While waiting for appointments in the renal clinic over the years, Hannah has always loved to read, and she wanted to help provide books to other patients. Hannah collected over 120 books to give to the clinic. “ \"Johns Hopkins Children’s Center means a lot to me, and I'm happy to do something for the other kids like me that have to go there,” Hannah says. “I love to read, and I wanted to help the older kids at the Children’s Center have something to do while waiting to see doctors.” FALL 2021 19
AMBER BRISCOE, 17 Founder and President of Arts-n-STEM 4 Hearts Amber began volunteering at local hospitals at the beginning of middle school and she recalls her interac- tions with pediatric patients as the most profound and meaningful. Her creative passions led her to engage young patients through drawing, painting and other crafts. Inspired by the “moments of joy” she saw when they discovered their creativity, and with her con- viction to make the world a better place, she combined her passions for art and science and founded the Arts-n-STEM 4 Hearts foundation, which supports 32 organizations (including Johns Hopkins Children’s Center) through volunteering and by providing art and science kits. ““To me, Johns Hopkins Children’s Center means family,” Amber says. “The resilience and courage of the patients and families continue to inspire me every day. I have an immense love for every child, and I am truly honored and blessed to be able to make a difference wherever I can. I hope to continue living a life of significance for my family at the Children’s Center.” 20 HOPKINS CHILDREN’S | hopkinschildrens.org
RUBY ROSEN, 5 “ Atrial Septal Defect “When I stayed at the hospital to get my heart fixed, Diagnosed with an atrial septal defect, or hole in I got a Frozen nightgown and her heart, at 6 months old, Ruby has been closely toys,” Ruby says. “Now other followed by pediatric cardiologists at Johns Hop- kids can get that when their kins Children’s Center ever since. Doctors carefully heart is fixed.” monitored her, hoping the hole would close on its own. Unfortunately, it was too large and needed to be closed surgically. At age 4, Ruby had open heart surgery. Just 60 days later, she ran a lemonade stand in her neighborhood to raise funds for the Children’s Center’s Division of Pediatric Cardiology. FALL 2021 21
DTrhaew of Pediatrics 22 HOPKINS CHILDREN’S | hopkinschildrens.org
“I just love the model of the child embedded within a family, and how that influences their health. … I wanted to be able to play the kind of role that I saw my pediatrician play in my life.” –nakiya showell Residents and faculty physicians share what attracted them to taking care of children and how they’ve evolved and influenced pediatric practice doing so. By Karen Blum SPRING 2021 23
Nakiya Showell says she first thought about a career in pediatrics as a teenager. She was 14 when her twin brother and sister were born, and she enjoyed watching them grow and accom- panying them to pediatric visits. She also was in- spired by her own dedicated pediatrician, a woman in an all-female practice in Philadelphia. “It was empowering as a young girl, the Children’s Medical Practice at Johns “I never wanted to give up being able seeing that model,” Showell says. “I had Hopkins Bayview Medical Center. She to see kids over time, and I was always no idea that every practice was not that always knew her pediatrics career would very attracted to preventive medicine, way.” be multifaceted, but she wasn’t sure ex- development and parenting,” she says. “I actly how. Then, during her decade at just love the model of the child embedded Now a general academic pediatrician, Johns Hopkins, different doors opened. within a family, and how that influences Showell gets to do a little bit of everything Now, her schedule varies from day to day, their health. … I wanted to be able to — research, teaching, administrative lead- whether supervising residents and medi- play the kind of role that I saw my pedia- ership work, and seeing her own panel cal students in clinic or holding research trician play in my life.” of patients at Johns Hopkins Children’s meetings. Patient care remained central to Center’s Harriet Lane Clinic, where she her interests. That’s a big part of the draw of general is the Associate Medical Director, and at pediatrics, say Showell and others, the op- 24 HOPKINS CHILDREN’S | hopkinschildrens.org
portunity to partner with families to help ing with adult caregivers.’ I think that’s out of the way and get to the ‘real’ medi- influence children’s health over the lifes- pretty essential.” cine,” he recalls. “It’s odd that I fell in love pan. Learning how to conduct research with it right from the beginning, but I also advances their care, as does teach- Solomon himself was one who was sur- was fortunate to be matched with pedia- ing and mentoring the next generation prised to find pediatrics. Although he had tricians and activities that inspired me to of pediatricians. To do so, they strive to worked with children at summer camps right some of the wrongs that I saw.” become complete pediatricians, the best and supervised teen trips, he began medi- they can be. Here, residents and faculty cal school focused on geriatrics. Then, he One of his early experiences was see- share their experiences at Johns Hopkins saw the light at the opposite end of the ing a juvenile detention center, which Children’s Center and reveal what in- spectrum during a third-year clerkship. quickly hardened 12- and 13-year-olds spired them and their journeys. But first who started off crying for their mothers. off, how did they arrive? “It reminded me of why I liked work- He saw a void he could fill. ing with children — their excitement and Aspiring physicians come to pediatric energy,” he says. “I really enjoyed partner- “What I saw just suggested that the primary care through different paths, says ing with them, and the dynamic between things we were doing in providing services Barry Solomon, director of the Divi- the child, the caregivers and the pediatri- to these children and adolescents were not sion of General Pediatrics and assistant cian. By the end of my first week, I knew what they needed,” he says. “That’s what dean for medical student affairs. In his pediatrics was the right fit for me.” drew me to the field of pediatrics.” role guiding pediatric residency appli- cants, Solomon reads their personal state- Hoover Adger, director of adoles- Some pediatricians say patient encoun- ments on what drew them to the field. cent medicine with an interest in addic- ters have helped shape their practices. tion medicine, says he was in the same “Some of them will say things like, boat. Showell, for instance, still thinks about ‘Ever since I was 5, I loved pretending to a toddler girl she had as a primary care be a doctor, and I knew I wanted to be “I started out with no thought that I patient during her pediatrics residency. a pediatrician,’” he says. “For others, it’s would head to pediatrics, but I scheduled The parents felt challenged maintaining a surprise, and it comes across to them it as my first rotation so that I could get it their daughter’s weight in a healthy range in medical school, and they had never worked with children. But it always comes down to, ‘I love working with chil- dren and families, and really enjoy that role in supporting children and partner- “I started out with no thought that I would head to pediatrics, but I scheduled it as my first rotation so that I could get it out of the way and get to the ‘real’ medicine. It’s odd that I fell in love with it right from the beginning, but I was fortunate to be matched with pediatricians and activities that inspired me to right some of the wrongs that I saw.” –hoover adger FALL 2021 25
early on; she had put on excess weight be- them, but they could see that their child ally able to do a lot with an idea and be tween ages 1 and 2. Showell talked with was starting to understand and adopt very collaborative, and that’s been very the parents about behavioral and dietary those same behaviors. They understood appealing for me.” changes they could make at home, which how important it was for them to be a they took to heart. Even at age 2, the girl positive role model when it came to be- Adger will always remember a patient also followed along. havior change.” he inherited during his first year at the Children’s Center: an 11-year-old boy When the family returned six to nine It was a key clinical experience that with uncontrolled type 1 diabetes. The months later, the girl and her family were stayed with her. If she could partner with child was well-known around the hos- doing better. They told her in Spanish, other families and understand their bar- pital for his multiple admissions. Adger “She goes around and says, ‘My doctor riers to healthy behavior changes, she first thought the family needed to know says no soda.’” thought, she could do more. It set her more about diabetes, and referred them on a course for research developing and to a nearby intensive diabetes education “The parents were laughing with me implementing programs that address program. A few months later, when the about their daughter’s sayings. Impor- childhood obesity, typically among un- boy had a new series of hospital admis- tantly, as a family, they really had made derrepresented minority and low-income sions, Adger says he felt like a total failure. significant changes, and she was now on communities. Making matters worse, the boy returned a more healthful growth curve,” Showell to the hospital yet again, for new-onset says. “It was amazing that not only had Most of Showell’s research has focused seizures and very low blood sugar. they integrated the advice that I gave on the prevention and management of obesity in children under age 5, but she When diagnostic tests revealed no new has joined forces with other mentors and answers, Adger went back to the basics, colleagues throughout Johns Hopkins retaking a good patient history. There, he who have allowed her to broaden her in- found an answer. The boy’s mother strug- terests in childhood obesity and cardio- gled with alcoholism. Depending on how vascular disease across the lifespan. intoxicated she was and how blurred her vision was, she pulled up either too much “That’s one of the amazing things of or too little insulin in the syringe. Adger being at a place like Johns Hopkins. There helped get the mother into treatment, are so many different schools of thought and over the next 10 years, this boy he and different researchers with different cared for had zero hospital admissions. It backgrounds,” says Showell. “You’re re- spurred Adger’s interest in learning more about addictions to help other children and families suffering in silence. “They are some of the most amazing, resilient people I’ve ever met in my life. I’m thinking about medicine as not just the health of that child right there in front of me, but thinking about what medicine is in the context of the health of the whole family and community.” – megan tschudy 26 HOPKINS CHILDREN’S | hopkinschildrens.org
Edith Dietz, at left with young patients and their mom, at the Children’s Medical Practice at Johns Hopkins Bayview Medical Center. “If you see your job as a doctor as being a problem- solver, or always fixing stuff, then probably pediatrics isn’t the right field. You have to be interested in seeing more minor nuances.” – edith dietz Megan Tschudy also was inspired by been clinic patients. Tschudy loves it. It’s impossible to think Dietz wasn’t a family interface. She was an intern, in- “They are some of the most amazing, swayed to the joys of pediatrics by her teracting with the first patient she saw in mother, Julia McMillan, a pediatric the Harriet Lane Clinic, where she is now resilient people I’ve ever met in my life,” infectious disease specialist and longtime medical director. As she listed a litany of she says of clinic patients and families. pediatrics residency program director at things she felt the parent should do, the “I’m thinking about medicine as not just Johns Hopkins. But Dietz took her own mother bounced her two young children the health of that child right there in front path. Although she enjoyed the sciences, on her lap. Finally, she looked at Tschudy of me, but thinking about what medicine she studied anthropology in college and and said, “I don’t mean any disrespect, is in the context of the health of the whole did a two-year stint with the Peace Corps but you don’t really know a lot about me family and community.” in Gabon in Western Africa. There, she personally or my family.” Tschudy had worked as a community health volunteer, to stop, draw a breath, and confirm the All patients are screened for social de- conducting sex education classes with ad- mother was right. terminants of health when they come olescents, and found herself surprised by into the clinic. Taking a medical home the open conversations locals would have After Tschudy left the room, she con- approach, pediatricians also are trained to with her about potentially taboo subjects tinued to think about the exchange and consider the mental and financial health like pregnancy and sexually transmitted what else could be done. Part of her role of the family, and help refer families to diseases. now involves supervising a community wraparound services like help finding health-worker program, with three staff food benefits or housing if needed. “I really started to understand the re- members who work with children and ward of being led into these very personal families in homes and schools. Through “With a lot of these kids and families, stories, and looked to as someone who this experience and a former program su- we form really deep bonds with them and could offer advice and guidance,” Dietz pervising in-home visits for medical resi- help them in so many ways outside of says. “That was my first taste of thinking dents, Tschudy has done countless home the traditional health system,” Tschudy that maybe medicine visits, gaining a greater appreciation and says. “For well kids who live in poverty, would be interesting to fuller picture of her patients. The clinic one of the best things we can do is help me.” she directs takes a holistic approach to get them into early Headstart. That may children’s needs. have a much broader, profound impact When she returned on their health throughout their entire to the United States, she About 94% of patients seen at the life than anything we could have done in began taking premed and Harriet Lane Clinic have Medicaid, and the clinic.” medical Spanish courses, a large percentage are African Ameri- followed by medical can. The case mix includes children who Across town at Johns Hopkins Bay- school at Johns Hop- are generally healthy and those who are view Medical Center, Edith Dietz kins. Seeing the di- some of the most medically complex in splits her time between seeing patients verse careers her the state. Some come to clinic visits with in the emergency room and in clinic at classmates a mother or grandmother who also have the Children’s Medical Practice, which were plan- sees largely Spanish-speaking immigrant families. FALL 2021 27
Building Leaders Through Autonomy “When I was a resident on the wards, I was really the one “We’ve created this culture where as you grow making the decisions,” says pediatrician Megan Tschudy. from your intern year up through your third year “There were always people to back me up, but I was teach- as a senior resident, you get these graduated ing while I was rounding, and helping to make medical deci- levels of autonomy to practice independently.To sions. There was a sense of ownership and the feeling that have that competence to feel like you were ready when I graduated, I was ready.” to be out there making decisions is huge.” –kristen cercone That formula, Tschudy adds, is what distinguishes the Johns Hopkins pediatric residency program. Kristen Cercone “Parents see us as authority figures, but we want to make agrees: “We’ve created this culture where as you grow from sure we’re on the same page, and both of us are at the same your intern year up through your third year as a senior resi- table with the same chair height,” adds Showell. “Just by dent, you get these graduated levels of autonomy to prac- opening up a conversation with a statement similar to that, tice independently. To have that competence to feel like you it allows parents to be more open and more transparent, and were ready to be out there making decisions is huge.” to feel more comfortable.” The program also exposes trainees to potentially career- Communication skills are particularly important with ado- changing mentors, says Nicole Shilkofski, pediatrics lescents, who often say adults don’t understand them, Adger residency program director. Sometimes, finding a mentor says. The fundamental reason that people don’t understand happens serendipitously; other times, learners have to seek them is they don’t listen to them, he explains, citing data out one or a panel of mentors. Now, Shilkofski helps match showing that the typical physician only listens 17–18 seconds up residents with advisers, hoping they enjoy the same inspi- before interrupting a patient the first time, and in between ration she had. questions they only allow one to two seconds for a response. “I saw my former program director, Julia McMillan, as “If you can give your patient just 90 seconds — and what a mentor and someone who really encapsulated what the physician doesn’t have 90 seconds? — you’ll see all the things ultimate pediatrician should look like,” Shilkofski says. “I re- that they’re concerned about,” Adger says. “There are a lot member wanting to be her. … It was always my dream to of patients, including myself, who walk away from physician fill her very big shoes, and I always thought about wanting to visits feeling that they haven’t been heard. They haven’t have a career in medical education.” been validated, and their doctor doesn’t have any idea what they’re really concerned about.” She still admires McMillan for her confidence and leader- ship skills. “As pediatricians, we’re taught to be keen ob- Trust also is key, says Tschudy: “It’s easy to tell [patients servers of people. … I think we do the same thing with role and families] what to do, but to make a plan with someone models. It wasn’t a single piece of advice [that inspired me] … and to see how that progresses over time, is an amazing but the perception of her and others in my career as role experience you can have with people that really bonds you models that I wanted to emulate their behavior and the way together,” she says. “You celebrate the wins with the family that they approached patient care.” and you mourn the losses with them, and you learn to really partner and be a team together.” What makes a complete pediatrician? A leader in general pediatrics? Top-notch diagnostic skills and the ability to listen and ob- serve in a nonjudgmental manner, to be a team player, and to see yourself as a partner working with families to pro- mote the best outcomes for their children are just some of the qualities that make for an outstanding pediatric provider, Johns Hopkins pediatricians say. Also, praising families for doing a good job, and making sure families leave each visit with plans for the next steps in care. “People who are naturally good leaders make for good pe- diatricians, because they’re calm under pressure, and they’re willing to take necessary risks to do what’s right for their patients and their families,” Shilkofski says. “Those are some of the things we look for in our applicants, and also things that we try to engender through education and training.” 28 HOPKINS CHILDREN’S | hopkinschildrens.org
ning with their degrees, she says, “It veri- munity settings, too. Michael Crocetti Community pediatrics also appealed fied for me that kids are the best patients found himself drawn to pediatrics hop- to Kristen Cercone, one of this year’s to have, and that pediatricians are the best ing to help children stay healthy at young chief pediatric residents. Cercone first colleagues to have. … If you see your job ages, to prevent adult disease. After being went to art school with aspirations to be- as a doctor as being a problem-solver, or chief resident at Johns Hopkins Chil- come a graphic designer. Finding a tough always fixing stuff, then probably pediat- dren’s Center, he worked in pediatrics job market upon graduation, she made a rics isn’t the right field. You have to be in- at Johns Hopkins Bayview for about 13 turnaround in her early 20s and went to terested in seeing more minor nuances.” years, before becoming chief of pediatrics medical school. for Johns Hopkins Community Physi- A recent clinic day showcases the variety cians. Now, at an office in Baltimore’s “I really enjoyed my time rotating of patients Dietz sees, from a 12-year-old Canton neighborhood, he sees the chil- through those services and found I was girl who had had COVID-19 experienc- dren of young urban professionals as well more fascinated by the pediatric diagno- ing a list of ailments including chest and as some of his former patients from Hop- sis and the interplay of working with kids abdominal pains, to a 22-month-old girl kins Bayview, along with some young and families than I was with other aspects with potential developmental delays, to adults in their 20s with chronic medical of medicine,” she says. “So, I think pedi- a 14-year-old girl with attention-deficit conditions such as cerebral palsy. He’s atrics found me.” hyperactivity disorder, anxiety and a been at it so long that he’s beginning to challenging home situation. The girl’s care for the children of some of his former In July, Cercone will start work at a brother was shot within the past year, patients. community primary care pediatrics clinic and her mother died of an overdose. The in Winchester, Virginia, run by other for- grandmother she lived with was recently “The families are phenomenal,” Cro- mer chief residents. Her interest in com- hospitalized with COVID-19, and the cetti says. “I’ve developed tremendous munity care was shaped by rotations at girl has gained over 50 pounds, putting relationships with them over the years, St. Agnes Hospital in Baltimore, spend- her at risk of developing diabetes. and that’s one of the big things that keeps ing time in the newborn nursery and see- me going, and affirms why I went into ing general pediatric inpatients. In each case, Dietz says, she works with pediatrics.” the patient and family to first address the “It was a place where I thrived,” Cer- areas they feel are most concerning. Dietz He starts visits with new families telling cone says. “When you work in commu- asks the 12-year-old to keep a pain diary, them he will be with them all the way, nity pediatrics, you really become and refers her to a pediatric cardiologist to but likes to let them figure some things embedded in the community. You get to evaluate her chest pain. She refers the tod- out on their own. “Parents get lots of know people who you see as patients, but dler girl’s mother to the Baltimore Infants advice about how to raise their kids,” he also the people who you work with really and Toddlers Program and to a pediatric notes, “but at the end of the day, it always well. There’s so much work to be done in ophthalmologist for further evaluations. comes down to what fits into their philos- providing good quality education and Although the 14-year-old had a challeng- ophy. … I always like to say, ‘If I’m wor- evidence-based pediatric care in that set- ing year, she expressed excitement about ried about something or have a concern, ting. That’s what I was looking for in a going back to school when it reopens, so I’m going to let you know. But other practice, and I was lucky enough to be Dietz plans to follow her more closely. than that, we’re going to go through this able to find this practice that really em- together.’” bodied all of that.” Dietz says she finds it rewarding work- ing with this population, many of whom Primary care pediatrics is much more have social challenges. Sometimes they than just 15- to 20-minute office visits, just need guidance about where to find Crocetti says. It’s taking care of the fam- certain resources, she says, or how to in- ily. A lot of the work gets done outside teract with their children’s schools. She those appointments, he notes: following admits to doubts about how some par- up on laboratory test results or referrals ents can balance work and the demands made, or responding to issues or prob- of parenting. lems that arise between scheduled visits. “This is what continuity is all about,” says “A lot of them have totally proven me Crocetti. “To be a complete and impact- wrong,” she says. “With a lot of family ful pediatrician, you have to be there for support and a lot of motivation to get your patients whenever they need you. their kids the best resources possible, fam- Many times, it’s at inconvenient times. ilies navigate the system and kids thrive.” Parents appreciate that so much.” Pediatricians make a difference in com- FALL 2021 29
Interview: Addressing Racism Head On Adolescent medicine specialist Maria Trent, academic pediatrics fellow Monique Jindal and education specialist Cheri Wilson discuss how pediatricians can help patients, families and themselves address the issue. How do discrimination and racism to believe and internalize them. That can Monique Jindal, left, and Maria Trent in affect young children early on? really have detrimental effects regarding Johns Hopkins Children’s Center. Trent: Children can see the subtle dif- your identity, what you choose to pursue, ferences in people around them starting what you see for yourself. What can pediatricians do? in infancy, so the impact of parental Wilson: Discrimination and racism can Trent: An easy first start is to make and societal behavior begins early. They affect the child’s perception and use of sure that everyone feels welcome in the see what their family looks like, and as health care, too. If the child observes his pediatrician’s office. Are there images of they grow and move through society, or her parents disrespected in a very poor diverse families on the clinic walls and they see the variation in packaging that manner and treated awful by doctors, the multicultural books, videos and toys in we all have. The problem is that they also child will say, “I’m not going there.” The the waiting area? Are staff diverse and able start to observe how adults assign value parents bring the child in for a well-child to deliver culturally and linguistically ap- to different groups of people. Racism is visit and now the child is afraid to go. propriate services to all families? Are you a socially transmitted disease because it is When they become adults, they do not performing quality assurance assessments taught and passed down, but the impact trust the health care system. This distrust to determine if your patients are having on children, adolescents and families is affects their participation in clinical trials, similar outcomes regardless of race, and significant from a health perspective. too. Early experiences do spill over. are you acting to improve quality when How so? possible? Can you improve your own Trent: There is this ongoing stress of liv- ing with racism that can lead to biological changes such as inflammation and hor- monal dysregulation. Perceiving that they are living in a threatening world, children may exhibit behavioral characteristics such as hypervigilance and remain in a crisis mode, unable to resolve or predict the next threat. Jindal: You hear all these negative mes- sages that you are part of and you start 30 HOPKINS CHILDREN’S | hopkinschildrens.org
behavior in practice, emphasizing that shown to be helpful. In addition, physi- whether someone is educated, has good all children should receive the best qual- cians can focus on a common group iden- insurance or is going to be a compliant ity of care? Doing that requires that we tity to connect with patients, to make it a patient. As a result, we may do the bare examine our own biases, acknowledge humanizing encounter. We also educated minimum for this patient so we can get to the role of racism in child and adolescent medical professionals about the history the next patient, who we are more com- health, and then commit to proactive of structural racism, like redlining and fortable with and prefer to work with. change that leads to strategies that opti- racial segregation, and how that impacts That is how implicit bias comes into play, mize clinical care, training behavior and a child. This subject is not mandatory in and it can be very harmful. research to reduce the health effects of all medical schools. How do you mitigate bias? forms of racism. How has the training been Wilson: By realizing that none of us is Training behaviors? received? perfect! Recognize that every single one Trent: In adolescent medicine, we de- Jindal: The curriculum has been well re- of us has many biases of which we are veloped a program to train health pro- ceived — some people cited it as the best unaware. If we are called on it, the first fessionals in cultural competency and part of medical education up to this point inclination is to get defensive, to say, “I communication using a variety of teach- in their career. However, some scientists treat all of my patients the same,” or, “My ing techniques. One of the most effective do not like us focusing on empathy, even intentions were good.” We cannot focus approaches has been to use the Johns if our whole job is about making human on the intention — it is the impact of Hopkins simulation center to allow pe- connections. If you cannot understand the bias. The answer is in seeing it, own- diatric trainees to practice managing one’s life story, what it might be like to ing it, engaging in introspection. After cultural communication and use of in- live in their skin, I do not think you get an encounter with a patient, you may terpreters. When we engage in this work, very far. I was initially surprised how dif- ask yourself, “Why did I react that way we have to ask ourselves if we are working ficult it was for providers to admit they and come to that decision?” Get feedback and living in line with the principles we might have some unconscious biases and from other people. embrace. How do we talk to and treat our need to work to move forward. This is a What are the benefits of self- adolescents? How do we interface with group of people who went into this pro- awareness and empathy? young people in public spaces? For par- fession to presumably help other people, Jindal: The reward is the patient’s well- ents and families, we focus on what kind so it might be very threatening to say you being. It is the exact opposite of what of advice and guidance around race and might be doing something that leads to happens if you do not have that empathy. racism we should be giving them. less than ideal care for people. We see that providers who have higher Jindal: During residency, I looked into Unconscious biases? levels of bias are less likely to provide the scientific literature and was amazed Wilson: As human beings, we operate high-quality care, are less likely to be to see a ton of literature linking racism to on autopilot in a world where we have to trusted by their patients. Research also poor health, and how our actions as health make a conscious decision about every lit- shows that higher levels of empathy de- professionals when driven by racist poli- tle thing. With everything and everyone crease the impact of racist tendencies cies impact quality of care. Therefore, we we interact with, some preconceived no- among healthcare professionals and lead created a racism in medicine curriculum tion or stereotype comes to mind driven to higher quality care. If you do lean into as part of resident training. We needed by the lens we bring to the world through this, you will gain stronger relationships to have something that does not just talk our upbringing, school and media, what with your patients and your patients will about poverty and social economics but we learn about a group of people. When have reason to confide in you and come instead addresses racism head on. we meet someone, we quickly size the to you. You the health professional get How do you address it? person up even before the person opens something out of it, too. In a profession Jindal: Self-awareness is the first step. their mouth. In a matter of seconds, we in which you are constantly interacting Studies show being aware of racist beliefs determine everything we need to know with people all day, every day, a warm and tendencies, our own implicit biases, about the person, whether they are safe and meaningful interaction leads to you makes a difference. Practicing empathy or not — originating from the whole having a better day. When you do better and perspective taking — actively putting concept of “friend or foe.” From a health by your patients, you feel better as a phy- yourself in the patient’s shoes — has been care perspective, we look at how a patient sician, as well. is dressed and make assumptions about FALL 2021 31
34 New Heart Center 35 A Cardiac ICU for Children 39 Lori Vanscoy Drops Anchor 44 Bridge Builder John Campo PediatricRounds | Section Index pediatricrounds ReNEW clinic staff, from left to right, psychologist Jeffrey Garofano, nephrologist Tammy Brady and dietician Diane Vizthum meet in the reading room of the pediatric cardiology clinic, where patients’ echocardiograms are screened. 32 HOPKINS CHILDREN’S | hopkinschildrens.org
Addressing Obesity-Related Hypertension By Gary Logan AT A RECENT GRAND ROUNDS, pediatric resident Adam FACTS & FIGURES DeLong updated Johns Hopkins Children’s Center fac- ulty about the state of childhood obesity in America. Na- 18.5% tionwide, he noted, rates of childhood obesity continue to rise, affecting 18.5% of children and adolescents, or 13.7 of children nationwide are obese. million young people. A child who is obese at age 12, he said, has a 75% chance of being obese as an adult, with all 25% the related and potentially lethal risk factors such as type 2 diabetes, severe hypertension, heart disease and obstructive of overweight children have hypertension. sleep apnea (OSA). However, there are effective resources against these threats, DeLong added, including one in the 75% pediatric cardiology clinic just down the hall from where he spoke. chance of children carrying on obesity into adulthood. “As a resident working with children, I feel like I’m offer- National Center for Health Statistics 2017 ing stage-one interventions every week, so I wonder if what we’re doing works,” says DeLong. “But there is a lot of and their families collaborate with the psychologist to set potential with the ReNEW clinic, its medical home model meaningful goals such as exercising and eating vegetables and one provider steering the ship.” at least once a day. The captain of that ship — the Obesity Hypertension “I would say 60%–70% of our patients make some Clinic: Reversing the Negative Cardiovascular Effects of meaningful progress in goal attainment from one session to Weight (ReNEW) — is pediatric nephrologist Tammy the next,” says behavioral psychologist Jeffrey Garofano. Brady. Each week, she and a diverse team from child psy- chology, nutrition and physical therapy assess the progress Another issue, OSA, is common among individuals who of young patients with obesity-related hypertension, which are obese. Pediatric pulmonologist and sleep specialist untreated leads to multiple other organ diseases, including Laura Sterni notes that with the rise in childhood obesity early onset heart disease. Up to 25% of children who are she is seeing “more and more patients” with OSA, which overweight/obese — eight times as many as in the general like obesity can exasperate hypertension and contribute to population, stresses Brady — have high blood pressure. cardiovascular issues. “We screen these kids for early signs of heart disease “A lot of the complications that you get from obesity related to their cardiac disease risk factors — things like alone — heart disease, hypertension, metabolic syndrome abnormal heart thickening or suboptimal relaxation — be- — you also see with sleep apnea alone,” says Sterni. “Put cause we know in adults these markers lead to arrhythmias, them together, and it’s unfortunately a perfect storm.” heart attacks and death,” says Brady. Multiple clinical services, evidence-based medicine, To lower those risks, Brady and the team see patients continuing research, and community partnerships, Brady every three months rather than every six months. At each stresses, are all vital to the success of the clinic and patients’ 2 ½-hour visit, the pediatric dietician guides patients on progress. However, at the heart of the clinic in Brady’s eyes nutrition and weight loss, and the physical therapist works is its open connection and communication with patients on exercise options for patients, especially those with and families. the obesity-related hip condition slipped capital femoral epiphysis. In addition, the behavioral psychologist consults “We’re still learning, but they’re putting a lot of faith in with and refers patients with underlying mental health is- our responses,” says Brady. “Working together, we’re figur- sues such as anxiety and depression that may be influencing ing out ways to motivate these kids and families.” their eating habits. To motivate behavior change, patients FALL 2021 33
PediatricRounds | Cardiac Care Expanding Leading the new center, from left Expertise to right, Jamie Schwartz, Bret in Congenital Mettler and Shelby Kutty. Heart Disease A new collaborative center representing disciplines of pediatric cardiology, cardiac surgery, and anesthesiology and critical care medicine offers lifelong care for patients born with CHD. By Karen Blum IN NOVEMBER 1944, Johns Hopkins sur- a new future.” University Medical Center, where he was geons performed the first landmark op- Although experts from different dis- director of pediatric cardiac transplanta- eration on an infant whose heart is unable tion and mechanical support. Pediatric to pump blood to the lungs to provide ciplines who care for CHD patients and congenital cardiac surgeon Dani- enough oxygen to the body. A surgical collaborated in the past, Schwartz says elle Gottlieb-Sen, with expertise in team led by Alfred Blalock, with his this reorganization establishes a fully in- the genetics and prenatal diagnosis of longtime technician Vivien Thomas tegrated, multidisciplinary approach at CHD, will have a clinical practice while guiding him, implanted a shunt to in- Johns Hopkins Medicine. directing pediatric cardiac research for the crease blood flow to the lungs. Pediatric heart center. cardiologist Helen Taussig worked “We have the ability to create dedicated with Blalock to develop the shunt. The services like operative teams, pediatric “Our goal is to provide a service line of procedure is credited with saving the lives perfusion teams, a cardiac intensive care care, where patients and their families can of thousands of children and launching unit and nursing,” she says. “That’s excit- call one phone number and have access to the field of modern cardiac surgery. ing, because these are people who want to outpatient care, surgeries, postoperative narrow their practice to CHD, to work care and research studies,” Mettler ex- In 2020, Johns Hopkins Medicine with these families long term and provide plains. “We do plan to develop the heart brought multiple specialists in pediat- them excellent care.” center at Johns Hopkins into an elite ric and congenital heart disease (CHD) destination.” into the new Blalock-Taussig-Thomas Center co-director Shelby Kutty, Pediatric and Congenital Heart Center. who also serves as director of pediatric With Johns Hopkins experts in mater- A collaboration among the divisions of and congenital cardiology, says the cen- nal-fetal medicine and obstetrics close at pediatric cardiology, pediatric cardiac ter’s structure maximizes the available hand, the new heart center will help ex- surgery, and pediatric anesthesiology and expertise at Johns Hopkins Medicine, tend full-service care for mothers and critical care medicine, the center offers benefits patients’ families and gives the in- their babies. The new center also incorpo- lifelong care for patients born with CHD. stitution a competitive edge for recruiting rates an adult CHD program, directed by top experts and garnering research dollars. cardiologist Ari Cedars, to manage “Johns Hopkins was the birthplace CHD patients are very complex, he adds, teens and young adults’ CHD needs as for congenital heart disease interven- often requiring a spectrum of services: well as any adult-onset heart conditions tions in surgery,” says Jamie McElrath “It’s a very outcomes-driven specialty, such as coronary artery disease and ar- Schwartz, co-director of the new center and the key to having good outcomes is a rhythmias. Also, because congenital heart and division chief of pediatric critical care dedicated team and teamwork.” disease affects a relatively small patient medicine. “We picked the name specifi- population, Mettler hopes to form clini- cally to include these three pioneers, as Bret Mettler, director of pediatric cal and research partnerships with other we are building on that past and creating cardiac surgery, is also a co-director of CHD programs. the center. He recently came to Johns Hopkins Medicine from Vanderbilt 34 HOPKINS CHILDREN’S | hopkinschildrens.org
PediatricRounds | Cardiac Care A Cardiac ICU for Children THE SO-CALLED BLUE BABY break- Darren Klugman, second from left, leading morning rounds in the PCICU. through saved the lives of thousands of children and also had the effect of those benefits, however, is not without and clinical care advances to improve attracting world-class pediatric heart its challenges. There are a limited num- our outcomes.” specialists to Johns Hopkins, includ- ber of trained pediatric cardiac intensiv- ing most recently critical care specialist ists, especially ones such as Klugman In addition to the evidence-based Darren Klugman. who is board certified in pediatrics, medicine research approach, Klugman pediatric cardiology and critical care notes there will be a strong focus on the “Building this cardiac critical care pro- medicine. The unit he is building will be family experience and parents as partners gram is an opportunity, when coupled composed of cardiac critical care special- in care. with the systems and programs and ists with specialized training, nurse prac- — importantly — the people at Johns titioners with training in cardiac critical “We will engage them in a way that Hopkins, that will allow us to provide care, and dedicated PCICU nurses. An allows them to be part of the healing and a level of evidence-based care and a internationally known researcher in care decisions for their child,” says Klug- patient-family experience that is truly congenital heart disease quality and out- man. “Without them, we can only do unique in this region and the country,” comes, Klugman will be leading efforts so much.” says Klugman. to advance outcomes in the PCICU and optimize practice through scientific in- Pointing to the people, the resources While one-year survival for infants quiry and quality improvement. and culture at Johns Hopkins, Klugman with critical congenital heart defects is optimistic that the PCICU will exceed has been improving over time, mortal- “One of the things that attracted me his expectations. ity remains high. Advanced surgical to Johns Hopkins was the enormous re- approaches allowing early intervention, search infrastructure and resources that “There are exceptional people here, a Klugman explains, along with spe- exist within our system,” says Klugman. rich environment of collaboration, a cialized cardiac critical care of these “All of the dedicated subspecialty care, thirst for knowledge and an intense de- children, has translated into better out- research and education here will allow sire to advance our care,” says Klugman. comes. Research shows PCICU care has us to ask important questions, to un- “We are facing the opportunity now to many advantages over traditional ICU derstand the differences between our really rethink and reinvigorate our focus cardiac care, including shorter ventila- patients, and participate in research to provide these patients and families tor stays, improved continuity of care with a comprehensive care program that and more seamless coordinated multi- will optimize the rest of their child’s disciplinary care, which is a necessity to life.” — GL ensure high-quality outcomes. Developing such a model multidisci- plinary pediatric cardiac ICU to achieve All of the dedicated subspecialty care, research and education here will allow us to ask important questions, to understand the differences between our patients, and participate in research and clinical care advances to improve our outcomes. – DARREN KLUGMAN FALL 2021 35
PediatricRounds | Neurosurgery A Sly Spinal Cord Tumor the patient, an 8-year-old boy from Western Michigan, Three days later, Jake was in the operating room designed for experienced progressive back and hip pain, constipation and pediatric neurosurgical patients at Johns Hopkins Children’s urinary hesitancy for over six weeks. His father took him to the Center. Because schwannoma tumors arise from the lining local emergency department, where a staff physician ordered of the nerve cells, Cohen knew dissecting a tumor wrapped an X-ray that, unfortunately, did not reveal the source of the around the nerve roots and spinal cord would be “tricky.” In- boy’s pain. traoperative neurophysiologic monitoring was needed, along with microsurgical tools to separate the highly adherent nerves The doctor said he should be fine in a week or two but he and spinal cord from the tumor. How did it go? The delicate got worse — it got to the point where he couldn’t walk and five-hour procedure, says Cohen, was successful. could only sleep with his knees on the bed,” says his father, Ke- song Hu, tearfully. “Jake is an awesome son, highly empathetic “The tumor is indeed benign and now it’s gone,” says Cohen. and he always tries to consider others first. When he hurts he “In the recovery room, Jake was moving his legs perfectly.” doesn’t tell you.” The father’s response? That prompted a visit to another physician, who gave the “The team was very highly efficient, very professional, and child an examination and a massage but no answers. The father provided emotional support,” he says. “I feel like they gave a then contacted colleagues at the university where he works as a second life to my son.” — GL neuropsychologist. They recommended a work-up at another hospital six hours away, where imaging uncovered the culprit: a tumor embedded deep in the spinal canal, beneath the dura at the thoracolumbar junction. Jake needed to see a neurosur- geon and quickly, one with extensive experience in resecting such evasive spinal tumors. His father knew right away where to look. The tumor was filling the whole spinal canal with no room to go anywhere else. If it got any bigger, he could have lost all motor function as well as control of his bowel and bladder. – ALAN COHEN, PEDIATRIC SURGEON Having grown up in College Park, Maryland, and as a for- mer neuropsychology student at Johns Hopkins, he was well aware of The Johns Hopkins Hospital’s reputation. A website search steered him to pediatric neurosurgeon Alan Cohen, who quickly initiated a telemedicine consult with the father and the referring hospital staff. With medical records and im- aging electronically in hand — and seeing the large schwan- noma tumor occupying and compressing the spinal cord and nerve roots — Cohen agreed time was of the essence. “The tumor was filling the whole spinal canal with no room to go anywhere else,” says Cohen. “If it got any bigger, he could have lost all motor function as well as control of his bowel and bladder.” 36 HOPKINS CHILDREN’S | hopkinschildrens.org
PediatricRounds | Gastroenterology A Surgical Solution for Acute Recurrent Pancreatitis riley smith, 15, from Pekin, Illinois, was worked closely with his colleagues in the Pediatric gastroenterologist Kenneth experiencing, in his own words, increas- adult pancreas center to learn the nuances Ng with Riley and his mom, Lindsay ing episodes of “excruciating abdominal of the TPIAT procedure. In this new ap- Smith, at a follow-up appointment pain.” Diagnosed with hereditary pancre- proach, the source of the pain — the pan- following his TPIAT surgery. atitis, he faced a potential lifetime reliance creas — is completely removed, and the on narcotics. Then, one of his doctors islet cells that make insulin are isolated ability to take over the insulin production told him about a new pancreas program and re-implanted into the liver. that the body needs. at Johns Hopkins Children’s Center. Today, after having his pancreas removed “There they can set up shop and over How do young patients respond to in a complex transplant procedure, Riley time reestablish their function,” says Ng. TPIAT? Most families report significant is free of the painful episodes and is wean- “The hope is that it will remove the origi- relief and improvement in their child’s ing off insulin injections to a point where nal environment at risk of these inflam- quality of life — they typically return to he may not need them at all. matory events, and still allow the body to school, social activities and sports. Parents do the important job of creating insulin.” are able to reduce or eliminate the child’s Not too long ago, such an outcome need for narcotic pain relief, but knowing would not have been conceivable, says Patients with chronic or recurrent pan- whether the patient will remain on insu- pediatric gastroenterologist Kenneth creatitis are first seen by Ng to determine lin therapy takes longer — sometimes a Ng. Two factors, Ng explains, came if they are candidates for the TPIAT year or more. into play. One is the formation of the procedure. The patient and family then International Study Group of Pediatric meet with Rhee to discuss surgical op- “Riley is doing great,” says Arcara. Pancreatitis: In Search for a Cure, a con- tions. Also, Kristin Arcara of pediatric “We’ve had one other patient recently, sortium that expanded understanding of endocrinology counsels the family on the and both are doing better than I ever pancreatic disease in children. The other post-surgical course regarding insulin and could have imagined with the use of the is the collaboration with the nationally blood sugar management, which is criti- most cutting-edge diabetes management known Johns Hopkins Pancreatitis Cen- cal for survival of the islet cells and their technologies.” — GL ter, which serves adult patients. The result was establishment of the pediatric Total Pancreatectomy with Islet Autotrans- plantation (TPIAT) program for children with acute recurrent pancreatitis. “Being part of the consortium has al- lowed us to not only build upon the foun- dational knowledge we already have but also cross-talk with other centers to learn and grow our TPIAT program, which translates into even better care,” says Ng. “Also, we’ve been very fortunate in being physically connected to The Johns Hop- kins Hospital, home to renowned leaders in pancreatic medicine. We’ve been able to leverage their expertise to get our pro- gram up and running.” The adult TPIAT program helped staff the pediatric program with its own expert transplant coordinator, Christi Walsh, who plays the vital role of coordinating the multidisciplinary care required for proper evaluation and treatment. In ad- dition, pediatric surgeon Daniel Rhee FALL 2021 37
PediatricRounds | Surgery Pediatric Surgeon Shaun Kunisaki The stem cell scientist and pediatric thoracic specialist discusses his research and the newly established pediatric esophageal center. What steered you toward a ca- tions, does it make sense to remove the administrative databases have their limi- reer in medicine? lung mass even if it may never cause a tations. Thanks to the vision of pediatric My father, who was an African-Ameri- problem? There is still work to be done surgeon-in-chief David Hackam, I am can obstetrician, died when I was only to maximize outcomes in these children. working on forming a multi-center pedi- 6 weeks old. With a promising career What are your goals here? atric surgery research consortium based ahead of him, his life was cut short. I One of the main reasons I came here at Johns Hopkins. have always felt that one of my purposes is to help establish a formal esophageal Other interests? in life was to pursue his unfinished busi- center, very few of which exist in this As a pediatric surgeon who does prenatal ness of helping others and to carry on country. I have been fortunate to treat counseling and treats newborns with his legacy. children from all over the country and birth defects, I am continually fascinated What is your niche as a pediatric from Europe. However, you need a truly with fetal organ development and how surgeon? multidisciplinary effort with pediatric that goes awry. About 10 years ago, I was Although I enjoy the full breadth of the surgery, gastroenterology, otolaryngol- given the opportunity to start a basic and specialty, my niche as a surgeon is in the ogy, anesthesia and speech pathology, to translational science laboratory looking treatment of fetuses and infants with create a center of excellence to manage at perinatal stem cell reprogramming non-cardiac thoracic surgical problems, the most complex esophageal disorders. using induced pluripotent stem cell which typically affect the esophagus or You need the collective experience of the technologies. In the lab, I learned how to lungs. Chest surgery in kids is quite in- whole group to figure out whether medi- transform skin, placenta and amniotic teresting but a bit of a neglected field. cines, endoscopic techniques, minimally fluid cells into stem cells that behave al- How so? invasive surgery, or open surgery can fix most identically to embryonic stem cells. Pediatric cardiac surgeons focus on fix- the problem. With this technology as well as funding ing the heart, and there really are very We understand you are also from the National Institutes of Health, few dedicated pediatric general thoracic reaching outside Johns Hopkins our lab has been studying how to better surgeons. Congenital anomalies of the to tackle these problems. regenerate the spinal cord in spina bifida lungs and esophagus often require highly Yes, over the past decade, there has been patients. We are also working with engi- complex operations, and there continues this growing realization that no individ- neers to learn how to grow lung tissue to be debate in our field about how to ual children’s hospital can really study in for patients with congenital diaphrag- best manage them. In some babies born a rigorous fashion many of the disorders matic hernia. The Holy Grail would be with esophageal atresia, do we stretch we take care of as pediatric surgeons. to use a child’s own fetal stem cells to the esophagus or replace it with another Most hospitals simply do not have improve patient outcomes at the time organ? In babies with lung malforma- enough of these patients, and national of surgery. 38 HOPKINS CHILDREN’S | hopkinschildrens.org
PediatricRounds | Pulmonology Lori Vanscoy Drops Anchor at Johns Hopkins systems engineer, pilot and astronaut and its varied manifestations.” ing background — machine learning were among Lori Vanscoy’s career That experience stimulated her re- — which she believed could also benefit choices as she entered the United States young patients with CF. Naval Academy, although she figured search interests in genetic modifiers her less than 20-20 vision would dis- of CF lung disease and the causes of “I’m interested in studying predictive qualify her for deep space travel. None- variation in response to cystic fibrosis machine learning algorithms to better theless, she did travel quite a bit after her transmembrane conductance regulator understand disease trajectory and treat- senior engineering design project — a vi- (CFTR) modulator drugs. Thanks to ment response at the individual level to sion aide for quadriplegics — cultivated these therapies, survival for patients with tailor our CF treatment for the individ- a strong interest in medicine. CF is now in the late forties and beyond, ual,” says Vanscoy. which Vanscoy calls a game changer. “I met with people at rehab facilities in What better place to pursue such in- Baltimore and realized that there was no “With the advent of these new medi- vestigations, she pondered? Flying and such things as remote control for com- cations just within the last year, we are being an astronaut may have fallen fur- puters,” says Vanscoy. “My work in that projecting that CF will now be a chronic ther down her list, she acknowledges, area became my bridge to medicine.” disease you live with and not one that but now as a pediatric pulmonologist confers any shortened life expectancy,” at Johns Hopkins, she feels the sky’s the She found her way to Duke Univer- says Vanscoy. “From the time I started limit. sity School of Medicine and a pediatrics in pulmonology, it has really been a tre- residency at the Naval Medical Center in mendous, seismic shift in what we can “I was really drawn to the interdisci- San Diego, California. Her next stop — do for patients with CF.” plinary collaboration, the opportunity to two months before 9/11 — was Camp work with people in the CF Center and Pendleton, where she served for three Following her fellowship, Vanscoy potentially the Applied Physics Lab, the years as a general pediatrician. served as the Cystic Fibrosis Center di- school of engineering and computer sci- rector for six years at the Naval Medical ence, to do what I want to do research “Our patients’ parents were being Center in Portsmouth, Virginia. There, wise,” says Vanscoy. “That’s what really deployed — it was a crazy time,” says she began to pursue another research drew me back, and I’m thrilled to be Vanscoy. interest related to her systems engineer- back.” — GL After her fellowship in pediatric pul- Pediatric pulmonologist Lori Vanscoy, with a patient in the monary medicine at Johns Hopkins Johns Hopkins Cystic Fibrosis Clinic. Children’s Center, Vanscoy was also deployed on a four-month long hu- manitarian mission aboard the USNS Comfort. With stops in Columbia, the Dominican Republic, El Savador, Haiti, Nicaragua and Panama, she was part of a team of pediatricians providing care for local children and families, which she found deeply rewarding. But her favorite pediatric experience was taking care of children with cystic fibrosis (CF) during medical school, residency and in practice as a general pediatrician, which led her to the fellowship. “I loved the chronic care aspect of tak- ing care of patients with CF, where you could really get to know them and their families longitudinally from infancy through college and young adult years,” says Vanscoy. “I was also fascinated by the complexity of this systemic disease FALL 2021 39
PediatricRounds | Pediatric Nursing A Nursing Trifecta Three new nurse managers share their personal path to pediatric nursing and vision for pediatric intensive care. By Christina Frank Colleen Gordon doesn’t hold back ED, and you have to find a bed and a New nurse managers, from left, when expressing how thrilled she is to nurse for each of them somewhere in the Christopher Reyes, Barbara Buckley have landed the job of nurse manager of hospital. I love trying to shift patients. I Johns Hopkins Children’s Center’s newly sort of thrive on adrenaline,” says Gor- and Colleen Gordon. opened pediatric cardiac intensive care don. “I like being in a high-chaos envi- unit (PCICU), calling it the “holy grail” ronment and straightening it out.” specialized classes and physicians partner- of opportunities. The PCICU opened its ing with us to teach us about echo data doors in October 2020 and is partnering Gordon has been blown away by the and cath lab information.” with the pediatric ICU to take care of commitment of her team of bedside infants to young adults with congenital nurses in the middle of a pandemic. It’s She adds, “I love what we’re trying to heart defects. rare, she explains, that nurses miss a shift do here. And I think what’s more impor- — something that can be a problem in tant is that the [other nurses] are just as “I mean, you never get an opportunity some hospitals, especially during the excited as me.” to open a brand-new unit in an institu- COVID-19 crisis. tion like Johns Hopkins, like, ever,” says 1 Gordon. “We all know about Alfred “I’m attributing it to the fact that the Christopher Reyes, prior to starting Blalock and Helen Taussig and Vivien people who are here chose to be in this as nurse manager of the Johns Hopkins Thomas and the work that they did for unit specifically,” says Gordon. “They pediatric intensive care unit (PICU) blue babies. So not only do I get to put didn’t just end up here as new nursing in the fall of 2020, spent over a decade my stamp on it — but I’m also doing school grads … they [are experienced working as an Army nurse at military the things that I love, which are patient nurses] who all left other jobs to come bases around the country and at Walter care, designing systems and putting op- here.” Reed Medical Center in Bethesda, Mary- erations in place. So, going to the mecca, land. He was trained in adult critical care, the birthplace of pediatric cardiology, and Gordon is determined to advance her but he found his calling when he was as- helping to design an entire unit — who team of nurses into clinical experts in signed to a pediatric intensive care unit. says no to that?” pediatric cardiac care: “They are going to Working with children inspired him to know just as much, if not more, than the pursue a doctorate in pediatric acute care Gordon was a bedside nurse for 12 new fellows that are coming in here, be- nursing. years, and has always worked with pediat- cause that’s how invested we are. We have ric cardiology patients. It was the perfect match and mix, she says, for her inquisi- tive mind: “It just clicked with me, it’s the thing that I felt made the most sense. There are so many different heart defects and variants of a defect.” In addition to her passion for pediat- ric cardiology, Gordon, who has a mas- ter’s in health care administration, loves a good bed-management challenge. She likens the task to a huge chess game. “You’ve got five patients sitting in the 40 HOPKINS CHILDREN’S | hopkinschildrens.org
PediatricRounds | Pediatric Nursing T he nurses provided so much comfort for me as a the niche of neonatal nursing as well: “I parent, I knew that my daughter was in good hands and love working with the families, especially that things were going to be OK. The care exceeded my when the babies are just born, and teach- expectations, and that’s what really pushed me back into ing parents about what’s going on with nursing. their child and what to expect.\" – BARBARA BUCKLEY, NICU NURSE MANAGER Before taking on the role of nurse man- ager of the neonatal intensive care unit “I love the resiliency children possess,” pediatric critical care medicine and nurs- (NICU) at Johns Hopkins in October says Reyes. “In spite of how sick they are ing. He gives the example of PICU Up!, 2020, Buckley worked at three different … they show an ability to find the good an innovative multidisciplinary program hospitals. While she loved being a bed- in everything, and they’re playful and easy developed at Johns Hopkins in 2016. In- side nurse, she also found herself taking to work with.” stead of keeping critically ill children in on more administrative roles — a natural bed, and often sedated, to avoid dislodg- fit, given her business experience. “I love Reyes’ experience as the chief nurse of ing IVs or a breathing tube — which was being able to help people figure out prob- a task force deployed to New York City standard practice at the time — the team lems,” she says. during the peak of the pandemic in the experimented with keeping these children spring and summer of 2020 served him more physically active and mobile dur- Managing the nursing department well when his team at Johns Hopkins was ing their PICU stay. In all cases, the kids during the pandemic has, naturally, been tasked with creating a seven-bed COVID- fared better physically and emotionally challenging. There have been staffing 19 area within the 28-bed PICU. and experienced no adverse effects. The shortages, as well as a heightened level of PICU Up! program has since become a distress among parents, who, with rare ex- “That was a really demanding time be- model for hospitals nationwide, and an ceptions, are only able to visit their babies cause we had to convert some of the rooms inspiration for Reyes. one at a time. “It’s unfortunate and very into negative pressure rooms, or what we challenging for the families because they call biodomes,” says Reyes. “Children “I want us to be the gold standard,” just can’t be with their baby together,\" typically don’t have many complications says Reyes. “I want people in the health says Buckley. [from COVID-19], but those that do care community to say that because Johns definitely are pretty sick, and are at in- Hopkins PICU does it, they should do it Still, Buckley is thrilled to be at Johns creased risk of developing multi-inflam- as well.” Hopkins Children’s Center. One of the matory syndrome. It’s my responsibility things that attracted her, she says, is its to make sure that my almost 150-mem- 1 focus on advanced practice and designa- ber staff have the resources necessary to Barbara Buckley graduated with her tion as a Magnet hospital for nursing. “To care for these COVID-19 patients while nursing degree in 1983, but she didn’t be- be accredited every few years, you have to still maintaining our standard operations come a nurse right away — instead, she show that the members of your nursing within the PICU.” worked as an account executive at a For- force have autonomy and are exemplars tune 500 company. It wasn’t until shortly in different areas, such as patient out- Reyes sees parallels in his roles work- after the birth of her third child in 1994 comes, community outreach, quality of ing at Johns Hopkins and in the military. that she found nursing again. Born with care and safety.” Both jobs, he says, involve putting effi- a cleft lip, her daughter would undergo cient systems and processes in place, and four surgeries by the time she was 2 years With this in mind, one of Buckley’s both have far-reaching global implica- old. goals is to encourage the nurses in her unit tions across the health care platform. to be actively involved in areas outside the “We were in and out of the PICU,” realm of bedside care, such as working on “Johns Hopkins really sets forth this she says. “The nurses provided so much committees and participating in making tone of being a global health leader,” says comfort for me as a parent, I knew my decisions about the department and the Reyes. “So, coming out of the Army, daughter was in good hands and that unit as a whole. She has also been serv- this opportunity allowed me to realign things were going to be okay. The care ex- ing as a mentor to the new nursing school my new civilian aspirations with what I ceeded my expectations, and that’s what graduates in the unit. historically knew myself to be, which was really pushed me back into nursing.” somebody who was in tune with serving “I love being able to support new nurs- a greater good.” Not only did her daughter’s experience ing grads as they navigate the nuances of reconnect Buckley with nursing, but with being a new nurse, figuring out how to Reyes’ vision is for the PICU nurses take care of patients, and how to balance to be innovators and thought leaders in that with their home life as well,” says Buckley. “I think they’re awesome. We really owe them a lot, and we should do whatever we can to keep them.” FALL 2021 41
PediatricRounds | Profiles Since childhood Betsy King, now a pediatric transplant surgeon, knew she’d be working with her hands later on in life. Organ Transplant Surgeon moment of panic: “What am I going to do with my life now?” Betsy King The answer came during her next ro- tation — transplant surgery. King was blown away. “It was just this beautiful combination of elegant, complex, techni- cally challenging operations and equally betsy king says she cannot pinpoint appealing to me. I never turned back.” complex and challenging medical issues when during her childhood outside Chi- Fast forward 15 years, and she found that the patients were going through,” cago that she first wanted to be a surgeon. herself in medical school at the Univer- she says. “The management they required But for sure, she says, her parents were sity of Chicago. There she held on to her really appealed to me. I said to myself, strong influences. vision of being a surgeon, perhaps a plas- ‘Wow, this is what I need to do, this is “My dad was a bricklayer, which had tic surgeon, she thought, after rotating my passion.’” nothing to do with surgery, but I saw on that surgical service. Her interest in After medical school, that passion my whole life as doing something with painting and sculpture seemed to com- deepened during a visit with her husband my hands, either building something or plement the subspecialty. to the Johns Hopkins medical campus. making something or fixing something,” “It seemed to be the culmination of As a couples match, they were both ap- says King, who is now helping to direct everything I was looking for,” says King. plying for residencies there — she in sur- the pediatric transplant program at Johns Despite the initial pull of plastic sur- gery and he in pediatric anesthesiology Hopkins. “I was fascinated with anatomy gery, it seemed to lack the medical com- and critical care medicine. While King’s at a really young age, maybe around 10,” plexity and patient management she had husband was familiar with Johns Hop- she says, “and the idea of using your appreciated as a student during internal kins because his father had trained there, hands to fix the human body was very medicine and other rotations. She had a she felt like she was in Oz, far removed 42 HOPKINS CHILDREN’S | hopkinschildrens.org
PediatricRounds | Profiles from her roots. campaign, a program in which she Stimulated by the potential impact, “I always thought of Hopkins as this and colleagues train patients and fam- King has been applying for National In- ily members how to identify live organ stitutes of Health funding to continue great mecca of medicine, where surgery donors rather than wait for a deceased her research on social determinants of was really born,” says King. “At the time, donor organ. Wait lists for donor kidneys health related to kidney and liver trans- it was kind of overwhelming for me.” and livers can be long, and patients can plant and to make transplant more acces- die before an organ becomes available — sible for underserved populations. One After a day of interviews and campus “a terrible outcome we want to avoid at avenue is a group of non-directed live tours, however, she was smitten. So was all costs,” says King. donors, or altruistic donors, who have her husband. offered to donate a portion of their liver One answer for a pediatric patient is a to any patient — adult or child — who “We met back up at the airport, and it friend or family member willing to do- needs it. was a nice moment because we had both nate a kidney or portion of their liver. fallen in love with Johns Hopkins and But historically, King notes, underserved “It’s an option for pediatric patients, immediately felt won over,” says King. and minority populations have not had especially for those who may otherwise great access to living related donors, not be able to get a live donor trans- How? King points to the people. “The partly because they may be unaware of plant,” says King. single greatest thing about Hopkins the resource. The live donor program is is this collection of people who are so designed to address that disparity. King and colleagues are also exploring dedicated and committed to the same ways to boost post-transplant support for common goal,” she says. “That was just “I was able to work with a group of patients and families in disadvantaged awesome — it was everything I wanted.” wonderful patients on our wait list in the communities. Managing the medications Baltimore area who otherwise wouldn’t and frequent clinic visits for a 2-year-old It was what she got, after she and her have known about live kidney donation,” liver transplant patient is no easy chore husband were accepted into their resi- says King. “We educated these patients even for a family with resources, notes dency programs. King also wanted re- and helped them understand the details King. For a single mom with a full-time search experience, so she took three years of live donation so they could be well job, it’s nearly impossible. away from her surgical training to pursue informed about considering that as an a Ph.D. program in clinical investiga- option for their care. In a way, this sort “Just coming to Johns Hopkins for labs tions at the Johns Hopkins Bloomberg of leveled the playing field for them, to can be a very big deal,” says King. “This is School of Public Health. Her focus was advocate for themselves and better utilize another area where we can empower our hospital readmissions following kidney resources.” patients and their families with varying transplants. Through that subject, she levels of health literacy, to engage them found a research track very much in sync That grass roots effort appealed to King and create accessible post-transplant care. with her surgical path and who she was and, more importantly, to the patients in We can help parents better utilize hos- at her core. the program. Even if they did not iden- pital and community resources that can tify a live organ donor, they were better help following transplant.” “In studying who is at risk for readmis- informed about transplantation, says sions and how it impacts post-transplant King. King sees such holistic pursuits and outcomes, one important but poorly un- her social determinants research as very derstood factor was the influence of social “It made such a profound impact on much part of the framework of the determinants of health,” says King. “That their lives to have that one-on-one inter- hands-on culture at Johns Hopkins and was the beginning for me in understand- action and engagement with the staff and the career she is building. As director of ing social disparity and how it can have a faculty here at Hopkins that they other- the pediatric surgical abdominal pro- negative effect on our patients.” wise wouldn’t get,” King says. gram, she is leading efforts to grow the program. In her free time, she still paints Around the same time, King was help- and sculpts — the other thing she does ing to run Johns Hopkins’ live donor with her hands. It was just this beautiful combination of elegant, complex, “As surgeons, we’re creative in the op- technically challenging operations and equally complex erating room, so for me it’s important to and challenging medical issues that the patients were have time to be creative in a different going through. … I said to myself, ‘Wow, this is what I way,” says King. “Also, my art is some- need to do, this is my passion.’ thing I share with my children.”— GL – BETSY KING FALL 2021 43
PediatricRounds | Profiles Bridge Builder John Campo when asked about early influences atrics resi- primary care for kids with anxiety and de- that pushed him toward medicine, John dency, for pression. His growing awareness that sui- Campo recalls the loss of his baby brother instance, cide is the second leading cause of death at 4 months of age. The oldest of four he thought among 10- to 24-year-olds, encouraged siblings, Campo, then only 8, remembers about psychia- him to think more seriously about the vividly the doctor trying to reassure his try as a subspe- relationship between suicide and lack of mother that her baby would be OK as he cialty, but is now access to mental health care. wrote her a prescription for valium. She embarrassed to recall persisted that something was wrong. that he had a hard time “How do you rescue these children?” thinking of it as a “reputa- asks Campo. He concluded that one an- “After that, I grew into the idea of being ble occupation” for a physician. swer lies in primary care medical mod- the family watchdog,” says Campo. “That Naturally, he found a door into mental els infused with mental health services. was really influential.” health. There, clinicians can bridge the gap be- tween pediatrics, psychiatry and tradi- A watchdog takes care of people, “I got an introduction into how physi- tional medicine, integrate mental health Campo figured, so in his early school cal illness can affect emotional life and services and create sustainable models of years he gravitated toward science and vice versa,” says Campo. “It gave me per- care. Such models require a strong collab- later found his way to medical school at mission to go into psychiatry.” orative culture, which drew him to Johns the University of Pennsylvania. What Hopkins. kind of doctor did he want to be? At the University of Pittsburgh Medi- cal Center, he was drawn to the interface Building bridges to collaborators, in- “If you asked me then,” he answers, between pediatrics and psychiatry, and cluding the Kennedy Krieger Institute “I’d say I don’t know, but I do know what disorders such as functional abdominal where Campo has the additional role of I’m not going to do. I’m not going to be pain — recurrent pain in the gastrointes- vice president of psychiatric services, is a surgeon because I don’t have that kind tinal tract with no obvious physical cause another goal. There a new developmen- of hand-eye coordination, and I definitely that may be provoked by anxiety. tal neuropsychiatry scholars’ program don’t want to be a pediatrician because was recently launched to leverage KKI’s being around sick kids really, really upsets “It’s common to see patients with ill- world-leading expertise in neurodevelop- me.” ness or subjective distress but not a clear- mental disorders and disabilities, which cut disease in the traditional sense, some will further enhance his division’s train- So, of course, after medical school he sort of pathology you can point to in a ing program. headed off to pediatrics in Philadelphia biophysical way,” says Campo. “The re- with the idea of being “an internist for ality is a large number of patients don’t “It’s part of our blueprint to together kids” with a specific interest in hema- fit neatly into the biomedical model, and create a division of child and adolescent tology-oncology. “I guess I can be a bit end up feeling terribly misunderstood psychiatry that has one unified culture of counter-phobic,” he says. and may not get the really good care they excellence across multiple sites,” says deserve.” Campo. “We want to make the whole In ways, Campo has intuitively fol- greater than the sum of the parts.” — GL lowed that path, immersing himself in As a pediatrician training in psychiatry, that which presented the greatest blend Campo found himself a referral source of challenge and anxiety. During his pedi- for these patients and parents frustrated by the lack of a definitive physical or psy- I got an introduction into chological cause. Known as someone who how physical illness can could, in his words “dance on both sides affect emotional life and of the equation,” colleagues believed he vice versa. It gave me had viable answers. permission to go into psychiatry. Troubled by what he considered to be a false dichotomy between physical and – JOHN CAMPO mental health in our health care system, Campo integrated mental health services into general medical settings and devel- oped a practice-based research network in 44 HOPKINS CHILDREN’S | hopkinschildrens.org
PediatricRounds | Profiles Erica Hodgman Follows a Mother’s Footsteps growing up, Erica Hodgman re- down there was trying to save lives and beginning to segue that advocacy spirit calls, she heard stories from her mother not thinking about themselves and basi- into other areas — such as fire safety, in- about her experiences as a neonatal nurse cally breathing in a pulverized building, jury prevention, gun control and social at New York-Presbyterian Hospital in which turns out is something you really support for disadvantaged communities. the 1970s, jumping on board medevac shouldn’t do.” Her research goals include development choppers to help rescue babies in need of of evidence-based interventions to im- emergency care. Hodgman also remem- Lobbying congress through a partner- prove burn care and reduce pain by using bers rummaging through her mother’s ship with the New York fire department better dressing options and laser thera- medical textbooks, fascinated by the and area hospitals such as Mount Sinai, pies. For Hodgman, the mental health world of medicine the pages revealed. Hodgman helped lead efforts to obtain impact for patients and their families, federal funding for screening and treating some of whom suffer severe guilt and “Needless to say, from then on I always the first responders for issues like heart- post-traumatic stress disorder, is another knew I wanted to be a doctor,” Hodg- burn, reflux and asthma-like diseases. important issue. man says. Laughing, she adds, “My mother clearly gave me the idea of be- “That for me was like an aha moment “Some families have a huge amount coming a pediatric surgeon.” for what you can do with research and of guilt, which can be a barrier for their advocacy,” she says. “You can actually participation in their child’s care,” says In ways, Hodgman has wedded her have a good impact on people.” Hodgman. “They may already feel like own vision as a physician with her moth- they were negligent and hurt the kid, and er’s experience as a savior of sorts for As a burn and trauma surgeon at Johns now they have to hurt him again when young patients. After medical school at Hopkins Children’s Center, Hodgman is they do the dressing change. It all com- Emory University, it influenced Hodg- pounds the guilt.” man’s choice to pursue treating children, W e are asking parents to and surgery to potentially have a dra- trust us with what is far Being a pediatric surgeon and all that matic impact on their outcomes — in and away most important comes with it is tough work, concludes other words, to save them. in their life. That’s really Hodgman, but it is well worth it. “We special. are asking parents to trust us with what is “You can have a child on the verge far and away most important in their of dying, who is that sick, and you can – ERICA HODGMAN life,” she says. “That’s really special.”— do your intervention, work together as GL a team, and that kid can not only survive and recover but go on to live a full life,” says Hodgman. That realization came through a gen- eral surgery residency and burn/trauma research fellowship at the University of Texas, a pediatric surgery fellowship at Le Bonheur Children’s Hospital in Memphis, Tennessee, and a surgical on- cology fellowship at St. Jude Children’s Research Hospital, also in Memphis. Underlying that technical training — and even medical school, for that matter — was a strong sense of advocacy that Hodgman gleaned from a program sup- porting first responders who had medi- cal injuries from the 9/11 World Trade Center collapse. “You have salty union plumber dudes who are suddenly finding human re- mains,” says Hodgman. “Everyone FALL 2021 45
PediatricRounds | Research Roundup 47 A ‘Game Changer Grant for MIS-C’ 48 Reducing Readmissions for Nephrotic Syndrome 49 Research Briefs ResearchRounds | Section Index researchroundup Shelby Kutty, left, and Cedric Manlhiot are leveraging patient data from a consortium of 19 hospitals to create artificial intelligence-based models for diagnosis, treatment and outcome prediction for children with multisystem inflammatory syndrome. 46 HOPKINS CHILDREN’S | hopkinschildrens.org
A ‘Game Changer’ Grant for Managing MIS-C By Gary Logan multisystem inflammatory syndrome U ltimately, by year four, “game changer” for children with SARS- in children, or MIS-C, is a complex syn- we'll establish an interface CoV-2 related disease. drome associated with SARS-CoV-2, the that can be deployed in virus that causes COVID-19. Children Epic and similar electronic During the first two years, patient data have presented with diarrhea, vomiting records with clinical data collected by the IKDR, a consortium of and severe cardiovascular problems in that can aid diagnosis and 19 hospitals, will be used to help create addition to respiratory problems. Other treatment. algorithms employing artificial intelli- symptoms include conjunctivitis, skin gence-based models for diagnosis, treat- rash, swollen hands or feet, cracked lips – SHELBY KUTTY ment and outcome prediction. In the and a red tongue — signs typically asso- third and fourth years, the performance ciated with classic Kawasaki disease, an Registry (IKDR), aim to produce such and clinical utility of these models will inflammatory disease that can cause cor- predictive models for a syndrome that be validated. onary artery aneurysms. Also confound- doesn’t act in a predictive way. How? ing this clinical picture, some children Kutty is chair and Manlhiot is director “Ultimately, by year four, we’ll estab- experience neurologic symptoms such as of Johns Hopkins’ Cardiovascular Ana- lish an interface that can be deployed headache, sleepiness and confusion. Cli- lytic Intelligence Initiative (CV-Ai²), in Epic and similar electronic medical nicians are significantly challenged when which uses artificial intelligence and records with clinical data that can aid it comes to diagnosing and managing machine learning tools to turn real-time diagnosis and treatment,” says Kutty. these patients, and predicting which clinical data into prediction models that children need hospitalization and which can help forecast patient outcomes. Because MIS-C has some similarities will become critically ill. with Kawasaki disease in its presenta- “The goal of CV-Ai² is to find better tion, the strategic partnership with the “Normally the clinical management of ways to utilize data and design solutions IKDR will provide an established data patients with this novel syndrome is very for important clinical problems, which collection platform and make use of sub- difficult — it affects multiple systems in turn are directly evaluated at the phy- stantial clinical and research expertise. and there is a lot of overlap with differ- sician and patient level,” says Manlhiot. Pointing to interest from some 40 other ent diseases and signs and symptoms that hospitals in the United States as well are still evolving,” says Shelby Kutty, After submitting a proposal to the Na- as hospitals in South America, France, director of pediatric cardiology at Johns tional Institutes of Health (NIH), the Italy, the United Kingdom, Taiwan and Hopkins. “Treatment at the onset and co-investigators were awarded a four- India, Kutty concludes that this work the epidemiology of this disease are still year, $4.8 million Rapid Acceleration of will grow the IKDR consortium and very new, presenting the need for salient Diagnostics-Radical (RADx-rad) initia- improve care and outcomes globally for prediction models for diagnosis and fig- tive grant, what Johns Hopkins Hospi- children with MIS-C. uring out which patients are likely to tal president Redonda Miller calls a develop new problems.” “Based on what we have gathered so far,” says Kutty, “this should lead to a Kutty and lead principal investiga- meaningful prediction model for pa- tor Cedric Manlhiot, in partnership tients all over the world.” — GL with the International Kawasaki Disease FALL 2021 47
ResearchRoundup | Nephrotic Syndrome Reducing Readmissions for Nephrotic Syndrome A multicenter care bundle aims to standardize treat- ment to keep children out of the hospital due to recurring complications of this kidney disease. as a pediatric nephrology fellow, ing network (GLEAN), a collaborative In clinic, pediatric nephrologist Olga Olga Charnaya led a quality improve- of nine pediatric nephrology programs Charnaya follows the GLEAN care ment (QI) initiative designed to man- all sharing the goal of Charnaya’s re- age nephrotic syndrome consistently in search to reduce patients’ need for acute bundle follow-up schedule for patients children. She learned that nephrologists’ care. The director thought, who better to with nephrotic syndrome. approaches vary in treating this disease, lead the division’s nephrotic syndrome which due to too much protein in the efforts? administered in the clinic at the time of urine can lead to frequent fluid buildup diagnosis. Also, the patient education and swelling in the abdomen, legs and “Their work was really an extension of packet is introduced, which includes feet. In addition, patients and families my fellowship project, so it made sense guidance on how parents can monitor lack standardized educational material that Dr. Neu asked me to be the QI lead their child’s loss of protein each day. to help them identify early signs of ne- for this project,” says Charnaya. “This phrotic syndrome relapse. The result is condition can be ideally managed in the The second follow-up visit should repeated visits to the hospital to manage outpatient setting.” occur within four weeks to assess for re- these complications and reduce the risk mission of disease and to plan for alter- of acute kidney disease. The result was the GLEAN Acute nate therapies and procedures, if needed. Care Change Packet, a care bundle that The algorithm includes a weekly or bi- “When it comes to nephrotic syn- started rolling out in November 2020. weekly nursing check-in call to monitor drome, everybody treats these patients Included are standardized steps for pa- patients’ and preempt complications. a little bit differently,” says Charnaya. tients with new onset nephrotic syn- “There is no one right way.” drome for each clinic visit during the 90 Following this GLEAN group for- days after diagnosis. For instance, the mula, Charnaya and colleagues will as- Charnaya’s QI project, however, first visit should occur within five days sess the outcomes of this approach to showed that the need for emergency after diagnosis and include a tuberculo- help determine best practices. room care or hospitalization for relapses sis screening and enhanced vaccination. can be reduced through a standardized Pneumovax, a vaccine to prevent peri- “Our goal,\" says Charnaya, \"is to start outpatient approach including patient tonitis, and an annual flu vaccine are with this multiprong approach and education. Under the initiative, in which study it in a systemic way to see the best 75%–80% of families were provided ne- mechanism for improving care.” — GL phrotic syndrome education, emergency department and inpatient admission counts were reduced for the first three quarters of the year, and clinic visits did not change over the period (Front Pedi- atr. 2019 March 29; 7:112). When Charnaya joined the faculty at Johns Hopkins Children’s Center in 2017, Alicia Neu, pediatric nephrol- ogy director, immediately leveraged her research experience. The division had just joined the glomerular disease learn- 48 HOPKINS CHILDREN’S | hopkinschildrens.org
Search
