Mitral Foundation Children's Valve Project Update

Mitral Foundation Children’s Valve Project Update

In May, my team and I traveled to the Dominican Republic, where – working with local pediatric cardiologists and cardiac surgeons – we successfully treated eight children suffering from severe heart valve disease. This update on our Children’s Valve Project tells the story of one of them: a 16-year-old Haitian girl named Naika, whose mother carried her into the hospital just days from death. After her operation, seeing Naika smile and watching her heart pumping healthily for the first time in years, was immensely satisfying. It was also a reminder of the transformative impact the Mitral Foundation can make on people’s lives – and how much more work we have to do. I hope you enjoy this update, and that you will give generously to support our efforts to save young lives, develop local expertise in mitral surgery, and elevate the overall quality of mitral surgery around the world. The need is great, and for the many children suffering from rheumatic heart disease, time is short. For children like Naika, your help can make a lifetime of difference. David H. Adams, MD President, Mitral Foundation Cardiac Surgeon-in-Chief, This page: Andris, 9, recuperating from surgery.

Mitral Foundation Children’s Valve Project Update / 2 33 Million People Suffer From Rheumatic Heart Disease In less developed countries this often leads to premature death. This is especially true in Africa, South Asia, the Pacific and the Caribbean. While the best medicine is prevention, the only hope in many advanced cases is to surgically repair or replace a patient’s damaged valves. Unfortunately, there is not a single hospital in the Caribbean that specializes in this lifesaving surgery – yet. Mitral Foundation Missions Save Lives The Mitral Foundation is a driving force in advancing the understanding of mitral valve disease, promoting the most effective mitral repair techniques, and elevating the quality of mitral surgery around the world. One of the Foundation’s priorities is to train talented surgeons in areas where they are needed most, and to establish corresponding Centers of Excellence in Mitral Surgery. We Need Your Help What would you pay to save your child’s life? Probably, just about anything. In the United States, surgery to repair a mitral valve can cost upwards of $150,000. In the Dominican Republic, we can perform the same procedure for roughly $9,000 – a modest sum by American standards but one that is far beyond the reach of most families in the region. Why the difference? In part, it’s because our medical missions rely on in-kind donations from our partners in the medical industry, on volunteer teams from Mount Sinai, support from local nonprofits, and reduced rates from our host hospital – a top-flight facility with excellent operating rooms. Given these economies, every dollar you donate makes an especially big difference in saving young lives. Please give generously, today. https://www.mitralfoundation.org/make-a-gift We are extremely grateful to Edwards Lifesciences Foundation and our other partners for sponsoring this life-saving work



Mitral Foundation Children’s Valve Project Update / 4 Meet Naika By the time 16-year-old Naika was carried into CEDIMAT Hospital in Santo Domingo, she weighed just 60 pounds and was struggling for every breath. Her rheumatic heart disease was so severe that doctors were uncertain she could even survive the surgery needed to repair her two malfunctioning valves. Unfortunately, doing nothing would mean certain death – probably within days. “Life doesn’t always present a good choice,” said Dr. David Adams, President of the Mitral Foundation and Cardiac Surgeon-in-Chief at the Mount Sinai Health System in New York, who had flown in with a small team to operate on Naika and seven other indigent children from Haiti and the Dominican Republic. “You just have to focus on the best possible outcome, and go for it.” For Naika, even just the opportunity for heart surgery had been highly unlikely; as a Haitian, her country lacked the medical expertise to deliver such care, even if her parents – subsistence farmers with 10 children – could have afforded the roughly $9,000 cost. Owen Robinson, who runs the Haiti Cardiac Alliance – a nonprofit that works to match young Haitians suffering cardiac problems with appropriate medical care – had first learned of Naika a year earlier, when her mother brought her to a hospital in Port au Prince, Haiti. After a visiting cardiologist identified major problems, Naika joined Haiti Cardiac Alliance’s Left: Naika and her mother meeting Dr. Adams (center), with Owen Robinson (left) from the Haiti Cardiac Alliance.

5 / Mitral Foundation Children’s Valve Project Update waiting list for surgery abroad. “The general state of health infrastructure in Haiti is poor,” said Robinson. “It’s never been at a sufficient level, especially in a specialty like cardiology. There’s a lack of training, a lack of hospital beds, and supply chain problems in terms of getting medicine.” Even getting to a doctor’s appointment can be dangerous, due to frequent political protests and roadblocks. Fortunately, with support from Every Heartbeat Matters – a philanthropic initiative led by Edwards Lifesciences Foundation to educate, screen and treat 1.5 million underserved people fighting heart valve disease – as well as support from Haiti Cardiac Alliance, CEDIMAT, the David Ortiz Children’s Fund, Mount Sinai Health System, and the Mitral Foundation, Naika now had a fighting chance for survival. Given the potential for last-minute medical and logistical complications, Naika’s final trip to Santo Domingo had gone relatively smoothly: just eight hours on a crowded bus, with a few stops by border guards and customs officials, before arriving at CEDIMAT. CEDIMAT’s chief pediatric surgeon, Dr. Juan Leon, is a congenital heart specialist. For the past six years, he has worked to build a strong surgical team at the hospital, which now performs heart procedures on approximately 200 children every year. Mitral valve repair, however, is an especially challenging surgery in children, and Naika’s case was an extreme example. The tentative plan in this case was to replace Naika’s mitral and tricuspid valves, which in her Right: Dr. Adams (left) repairs a mitral valve, demonstrating the complex technique to Dr. Leon (center) at CEDIMAT Hospital in Santo Domingo.



7 / Mitral Foundation Children’s Valve Project Update poor condition would be the quickest and safest next patient, and then the next – all of whom operation because it would require her to spend presented their own unique and urgent less time on the heart-lung machine. In a best- challenges. Meanwhile, the Intensive Care Unit case scenario, Dr. Adams and Dr. Leon would was updating them on Naika’s condition. attempt to repair the valves, a longer and more challenging operation, but one that would offer “It was incredible how well she responded,” Dr. her a better chance at a longer, healthier life. Leon said. “Everyone was surprised, even our cardiology department. They couldn’t believe that Given the limitations of imaging technology, she was able to make it.” however, the surgical team wouldn’t know which course to pursue until they opened her chest, A day later, Naika was smiling. Two days after examined the valves, and assessed her stability surgery, she was sitting up in bed, her heartbeat on the heart-lung machine. In either case, the strong and healthy for the first time in years. fluidity of the situation, and the dangers of Now, instead of having just days to live, she has prolonged surgery, would require fast decision- a good chance at decades. It was a thrilling making. outcome for her and her family, as well as for the entire team that worked so hard to save her life. “In cases like this, efficiency is really important,” Dr. Adams said. “You have to have a game plan “When something like this actually works, I don’t up front. You have to make decisions quickly. so much celebrate as I exhale,” said Robinson, You have to do everything once, correctly. And from the Haiti Cardiac Alliance. “Because you all of that requires a great deal of trust between have to take responsibility for the fact that everyone on the team.” someone in her condition might not come out of surgery alive. I’m so proud of the team, and As it turns out, Naika’s valves were in better happy for her family.” condition than expected, and Dr. Adams and Dr. Leon decided to attempt a repair. Nearly four Naika’s surgery was one of eight that Dr. Adams hours later, Dr. Adams was still finishing the last and Dr. Leon performed over three long days. All of many small sutures in her heart, conscious of left the hospital within a few days, and returned the ticking clock but focused on doing the job home healthy. exactly right. Dr. Leon, who is working to build his team’s “There’s a big difference between being a fast capabilities in mitral valve repair, said that surgeon and an efficient surgeon,” Dr. Adams collaborating with Dr. Adams accelerates the said. “In a case like this, there is no room for learning process. “Working beside Dr. Adams, error. If you have to go back and redo something, you get so much information that you can’t get you’re going to put the patient at much greater from books, or see in videos. He will explain risk.” every single step, point out the different formations, and how to read and successfully When Naika’s surgery was finally complete, repair the valve,” he said. “Because every patient the surgical team turned its attention to the is different, and every chart is different, it’s not

Mitral Foundation Children’s Valve Project Update / 8 Above: Andris (left), Naika (center), Emmanuel (right) and the other patients all left the hospital just four or five days after surgery, with the prospect of living long, healthy lives. something you can learn in just a couple of ongoing partnership. Already, thanks to ongoing surgeries.” support from donors, more children are in the queue for surgery. “We couldn’t do this work Amanda Fowler is Executive Director for Global without the generosity of Edwards Lifesciences Corporate Giving at Edwards Lifesciences, and Foundation and our other partners,” said Dr. leads Every Heartbeat Matters. “We love what Adams. “It’s urgent, it’s important, and it makes a we do,” Fowler said. “The best part is that we are big difference.” truly making a difference in people’s lives, and that the decisions we make in an office in Irvine, The need for pediatric valve repair is especially California, are directly impacting families around great throughout the Caribbean, where untreated the world. It’s personal for us. To see the faces rheumatic fever – and the resulting rheumatic of patients and get to know them, and really feel heart disease – is all too common. “That’s a the impact of this work, is incredibly inspiring for population that’s been neglected, and nobody in all of us.” the Caribbean is doing valvular repair. I hope we can continue this,” Dr. Leon said. For Dr. Adams and Dr. Leon, this surgical mission was just the start of what they envision as an For patients like Naika, that will be a lifesaver.



Left: A day after surgery, Naika was hungry for McDonald’s, so Dr. Medhi Oloomi - a Mount Sinai intensivist overseeing her immediate post-surgical care - sent a volunteer to get some for her. Here she is enjoying a hamburger and chicken McNuggets, which she shared with Dr. Adams. Top: Before surgery begins, the Mitral Foundation and CEDIMAT teams always collaborate on a thorough case review for every patient. This helps ensure the right diagnosis, the best possible treatment, and appropriate post-operative care. Bottom: One key to success in any Operating Room is effective teamwork. Here, our volunteer medical team and CEDIMAT’s Pediatric Cardiology team celebrate three days of successful surgery, which saved the lives of eight children.

11 / Mitral Foundation Children’s Valve Project Update May 2019 Patients Our May 2019 mission to Jhony, 7 Andris, 9 the Dominican Republic saved eight children’s Diagnosed with rheumatic Diagnosed with rheumatic lives. Sadly, three who heart disease at 6 heart disease at 8 were awaiting surgery died shortly before we arrived – a loss that highlights the urgent, ongoing need to develop and hone the skills of talented local surgeons. Rafel, 12 Emmanuel, 14 Gil, 15 Diagnosed with rheumatic Diagnosed with rheumatic Diagnosed with rheumatic heart disease at 11 heart disease at 13 heart disease at 8 Yonaris, 15 Naika, 16 Rainiel, 16 Diagnosed with rheumatic Diagnosed with rheumatic Diagnosed with rheumatic heart disease at 11 heart disease at 12 heart disease at 7

Mitral Foundation Children’s Valve Project Update / 12 How to Help the Mitral Foundation Save More Lives The Mitral Foundation is working urgently to save lives, and we need your help. To support more research into mitral disease, develop local programs in mitral surgery, expand the Children’s Valve Project, and elevate the quality of mitral surgery around the world, please visit www.mitralfoundation. org and make your gift today. Thanks to donors like you, the Mitral Foundation was able to develop an expert program in mitral surgery at Maharaj Nakorn Hospital in Chiang Mai, Thailand, in 2014. As part of this initiative, attending cardiac surgeons Thitipong Tepsuwan and Chartaroon Raimsukcharoenchai both spent a year at Mount Sinai on advanced fellowships in valve repair. Surgical teams from Mount Sinai also operated alongside them in Chiang Mai. Dr. Tepsuwan now leads his hospital’s mitral surgery program, which performs more than 220 mitral operations every year – a caseload that continues to strengthen his team’s surgical abilities. The Foundation’s next goal is to establish an expert program in mitral surgery in the Dominican Republic, by developing the skills of a talented cardiovascular team at Santo Domingo’s CEDIMAT Hospital. Thank you for supporting the Children’s Valve Project with a generous donation.

13 / Mitral Foundation Children’s Valve Project Update May 2019 CVP Volunteer Team Organizing a medical mission is complex David H. Adams, MD and demanding. Each mission requires a wide range of experienced personnel. Our President, Mitral Foundation volunteer teams include physicians, nurses, and support staff, ensuring that patients receive expert care in all aspects of their surgery. Hannah Adams Anelechi Anyanwu, MD Inventory Coordinator Cardiac Surgeon Ricardo Lazala, MD Medhi Oloomi, MD Director for Latin American Relations, Mitral Foundation Intensivist

Mitral Foundation Children’s Valve Project Update / 14 Chartaroon Rimsukcharoenchai, MD Mary Joy Santillan, RN Cardiac Surgeon Senior Operating Room Nurse Gideon Sims Tony Vullo, MD Administrative Director, Mitral Foundation Anesthesiologist See more cases and photos from Mitral Foundation missions at: https://www.mitralfoundation.org/medical-missions

Support the Mitral Foundation The Mitral Foundation is working urgently to save lives, and we need your help. To support more research into mitral valve disease, develop local expertise in mitral valve repair, and elevate the overall quality of mitral surgery around the world, please visit our website or call Mitral Foundation Administrative Director, Gideon Sims, at 212-241-4119. https://www.mitralfoundation.org/make-a-gift The Mitral Foundation is a 509(a)(3) supporting organization of The Mount Sinai Hospital and is exempt under section 501(c)(3) of the Internal Revenue Code. All gifts are tax-deductible to the fullest extent allowable by law. The Mitral Foundation has adopted a conflict of interest policy covering any dealings with any directors or company in which they have a financial interest.