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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.
At the Heart Transplant Program at Boston Children’s Hospital, our treatment is informed by our research. We believe that our combination of specialized training, extensive experience and innovative tools and techniques allows us to focus on medical therapy to sustain these children until they can undergo a transplant—and in some cases, makes it possible to delay transplantation or avoid it altogether.
Boston Children’s is a global expert in the use of VADs for children whose hearts are failing as they wait for a donor organ. But because these devices require complex open-heart surgery and carry a risk of significant complications, we consider them a last resort for children with serious conditions, such as with single ventricle heart defects.
Our program offers an immunosuppressant protocol that avoids the use of chronic steroids. This means that your child could avoid the side effects commonly associated with steroids - including hypertension, diabetes and obesity – and enjoy a healthier post-transplant life.
Members of our research teams are also investigating the efficacy of the current system of heart organ allocation. Gaining a better understanding of the best process for optimal outcomes may lead to significant changes at the national level of heart allocation with more kids getting donor hearts more quickly.
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 procedure saved the patient’s life and made pediatric medical history.
That same year, the FDA approved the nation’s first pediatric multi-center clinical trial of the Berlin Heart. Not only did Boston Children’s cardiologists play a central role in designing the protocol and go on to serve as co-principal investigator; our hospital was also chosen as one of the study sites.
As the device awaited full approval, the FDA deemed us one of only 10 pediatric institutions in the U.S. entrusted to implant and maintain the Berlin Heart in patients.
Four years and nearly 50 trial patients later—90 percent of whom successfully transitioned to a transplanted heart after using the device—the Boston Children’s Heart Center team saw their vision realized: the FDA formally approved the use of the Berlin Heart in children of all ages experiencing end-stage heart failure.
Among all pediatric organ transplant candidates, children awaiting heart transplants have the highest mortality rate. By helping the Berlin Heart secure FDA approval, Boston Children’s has ensured that these patients have the option of a critical “bridge to transplant.”
Now, our cardiologists and cardiac surgeons are working to identify and refine the mechanical and ventricular assist devices (VADs) of the future.
In coordination with the New England Research Institute, Almond and Boston Children’s Heart Failure/Transplant Program Medical Director Elizabeth Blume, MD, are designing multi-center, multi-device clinical trials of new VADs.
These next-generation devices also carry great promise, as they allow for a continuous flow of blood while avoiding the risk of clots and stroke associated with previous VADs.
Many other centers use VADs as the primary treatment plan for children with congestive heart failure and cardiomyopathy. Understanding timing of device placement is the next important milestone for this field.
Here at the Heart Transplant Program, our treatment is informed by our research. Boston Children’s is home to the world’s most extensive research enterprise at a pediatric hospital.
We also have the greatest level of partnerships with the top research, biotech and health care organizations in Boston, working together to improve kids’ health.
Boston Children’s Hospital Heart Transplant Program is one of five sites awarded a grant to study the outcomes and mechanisms surrounding patients that are highly sensitized. Children with congenital heart disease become ‘sensitized’ at a higher rate from the homograft material used in their neonatal repairs.
Historically, these patients had longer wait times and more risk. Our clinical protocol has allowed patients to forgo the crossmatch and augment the antibodies using plasmapheresis and IVIG. Our NIH trial is studying the mechanisms behind this protocol.
In addition, the Heart Transplant Program participates in many other multi-center studies and registries, including the Pediatric Heart Transplant Study, the Pediatric Cardiomyopathy Registry, ESLO (ECMO Registry) and Intermacs Registry (for ventricular support devices).
This participation keeps our specialists on the forefront of medical technology and best practices. Learn more about specific studies in the fields of:
Our Heart Transplant Program offers an immunosuppressant protocol that avoids the use of chronic steroids. This means that your child could avoid the side effects commonly associated with steroids - including hypertension, diabetes and obesity – and enjoy a healthier post-transplant life.
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.”