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Boston Children's has launched the world's 1st program dedicated to offering hand transplants to children who qualify.
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Today it's been 5 years since my son Matthew's A.V. Canal repair. I remember the nurses: Shannon, Jaime, and Patrick....They were so good with Matthew and with my husband and I.
If it wasn't for Children's Hospital and the Cardiac wing he wouldn't be here. Thank you all for what you have done for us and giving him a chance to grow in front of our eyes! Thank you Dr. Mah, Dr. Baird, and Dr. de Ferranti we owe you the world.
5 years ago today, I placed my one week old son in Dr. Emani's hands to repair his COA. I remember it like it was yesterday, and I'm thankful every day for the care we received at the Heart Center at Boston Children's Hospital.
1 year ago today Dr Baird performed open heart surgery on Cayman. It did NOT slow him down. Today his heart is as good as new and he barely even has a scar. Thank you Dr Baird and everyone on the cardiac floor at Boston Children's Hospital.
Two years ago today we were at Boston Children's Hospital and our daughter, Emily, was having an aortic stent placed. We were told it would have to be replaced by the time she turned 2 (which was last June) but its still in place and working beautifully. We thank God every day for the amazing work of Dr. Gerald Marx and Dr. James Lock.
This weekend we celebrated our beautiful daughter, Mikayla's 1st birthday and that’s thanks to the amazing surgeons and staff on the 8th floor!! Mikayla was born with a rare diagnosis of Pentalogy of Cantrell which included several heart defects.
In 2007, Boston Children’s Hospital cardiac surgeon Francis Fynn-Thompson, MD, received special permission from the United States Food and Drug Administration (FDA) to implant a Berlin Heart®—a mechanical device that temporarily takes over the heart’s pumping functions—in a 9-year-old boy on the waiting list for a donor heart.
This groundbreaking use of a ventricular assist device (VAD) in a child not only saved the patient’s life, but it also laid the foundation for advancing VAD support in children.
Over the next four years, Boston Children's cardiologists lead the design of protocols and conducted the needed research so the device could be approved for full pediatric use throughout the United States. In 2011 the Boston Children’s Heart Center team saw their vision realized when the FDA formally approved the use of the Berlin Heart in children of all ages experiencing end-stage heart failure.
Defining the next era
Barely a year after the Berlin Heart was approved for the use in American children, Boston Children's cardiologists and cardiac surgeons are already working to identify and refine the VADs of the future.
At Boston Children’s Hospital, we believe that every child is unique and, as such, requires a comprehensive approach to advanced cardiac support tailored to his or her size and anatomy. That is why we are working so hard to expand the number and types of VADs available for use in children.
By applying technology originally developed for adults, Boston Children’s is expanding VAD options for children. Introduced to Boston Children’s in November 2012 by cardiologist Christina VanderPluym, MD, and the VAD team, the HeartWare HVAD® is a new generation device that continuously pumps blood from the failing heart to the body. The pump is implanted directly into the heart with only a small power cord exiting the body, allowing patients to resume all types of activities, including school.
Boston Children's patient Kyah DeSimone is currently benefiting from Boston Children's research. In 2012, Kyah became one of only a handful of children in the United States to undergo implantation of this portable, self-sustaining VAD, allowing her to return home, go to movies and hang out with friends, all while awaiting heart transplant. She was the first child in the United States to return to school with this device.
Looking to the future
In coordination with the New England Research Institute and the National Heart and Lung Blood Institute, Boston Children’s Heart Failure/Transplant Program Medical Director Elizabeth Blume, MD, and Ravi Thiagarajan, MD, medical director of the Cardiac ECMO Program, are designing a multi-center clinical trial of three new heart pumps for infants and small children, a group that faces the highest risk of mortality.
Traditionally, these small children have the highest risk of blood clots and stroke, as well as the fewest options for advanced heart support. Boston Children's study will be the first extensive evaluation of a continuous flow VAD specifically designed for infants, as well as two miniature pumps capable of providing full heart-lung support.
By focusing on the smallest patients in need, we hope to find better and safer ways to support children successfully to transplantation.
Exploring all options
Boston Children’s is a global expert in the use of VADs for children with failing hearts waiting for a donor organ. But because these devices require complex open-heart surgery and carry a risk of significant complications, Boston Children’s cardiologists and surgeons are researching ways to improve patient outcomes by improving patient selection. This is especially true for children with complex congenital heart disease, including single ventricle heart defects, where Boston Children’s has become a national leader in the use of ventricular assist devices.
Being able to live at home with a ventricular assist device while waiting for a heart transplant can offer benefits to the patient and family. Read about one child’s experience below.
Freedom in waiting: A ventricular assist device gives Aidan’s family independence
When Aidan was just 8 months old, his parents Patrick and Tavina received shocking news—their son had hypertrophic cardiomyopathy, a rare but serious disease that affects the muscle of the heart. Given his young age and severity of his condition, the early prognosis was bleak.
“Things didn’t look good at first,” remembers Patrick. “We were steeling ourselves for the real possibility that Aidan wouldn’t make it to see his first birthday.”
But, heart condition or not, little Aidan was a fighter, and with minimal medical management his condition stabilized. Over the years, he grew stronger and was seen periodically by doctors from Boston Children’s Hospital’s Heart Center who monitored his heart health. However, even though Aidan had fared much better than originally hoped, there was never any doubt that his condition would worsen with time—when his doctors spoke about a heart transplant, it was in terms of when not if.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”