Pediatric Heart Transplant Research

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Here at the Heart Transplant Program, our treatment is informed by our research. Boston Children’s Hospital 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. Read on for examples of our science-driven care.

Ensuring that hearts go to children who need them the most:

Clinical research by Boston Children's staff on the high waiting list mortality problem among children waiting for heart transplant led UNOS to establish a committee that will re-evaluate its heart allocation policy for children. It's anticipated that a new heart allocation policy for children may be implemented as soon as 2013, which will decrease waiting list mortality among children.

A life-saving bridge to transplant

Sometimes, children waiting for donor hearts are so sick that they must be placed on life support mechanisms that keep them immobilized and unresponsive. But now there is the possibility of a better way.

For years Boston Children’s cardiologists and cardiovascular surgeons have researched, written about and implanted ventricular assist devices (VADs), which pump blood from the heart to the body and/or to the lungs. In 2007, Boston Children’s became one of the first hospitals to implant a Berlin Heart®—a mechanical device that temporarily takes over the heart’s pumping functions—in a child.

In 2013, our team became the first in America to send a child back to school with a new implantable VAD, called the HeartWare® device. Learn More.

Gentler medications, just as effective

Our Heart Transplant Program offers an immunosuppressant protocol that avoids the use of 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.

Rethinking the distribution process

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.

Working together to understand the effects of antibody and improve patient outcomes

We are currently one of six pediatric heart transplant centers participating in the Clinical Trials in Organ Transplantation in Children 04 study (CTOT-C04). The study looks at the effects of preformed antibodies against donor hearts on the immune system and on outcomes after heart transplant. The protocol allows us to consider transplantation for children with the highest levels of preformed antibodies by removing these antibodies at the time of transplantation. Boston Children’s Hospital serves as both a clinical site and a translational laboratory for this study.

Developing Less Painful Ways to Protect Transplanted Hearts

Cardiologists here at Boston Children’s are working to develop innovative ways to ensure that hearts are rejection free. Kevin Daly, MD, is working to develop a blood test that can be used to diagnose post-transplant coronary artery disease. This test could lead to a reduction in the number of painful cardiac catheterization procedures for pediatric heart transplant recipients. Our hope is that a blood-based test may even lead to earlier diagnosis and earlier treatment for post-transplant coronary artery disease thus reducing the need for re-transplantation. We are also exploring innovative approaches using PET and ultrasound imaging to diagnose heart transplant rejection. These non-invasive imaging approaches can be performed using a simple IV and specialized imaging equipment. Such an approach would help reduce the need for painful cardiac catheterization procedures and biopsies of the transplanted heart to diagnose rejection.

Elliott Cleckler was born with long-gap esophageal atresia – a serious condition that is notoriously difficult to treat. In this short video series, his parents, Jay and Heather, share their story.

Tragic as it is to lose a baby to sudden infant death syndrome (SIDS), some families can take comfort in being able to save another child’s life. A study by Children’s transplant cardiologist Christopher Almond MD, MPH, and colleagues in the Department of Cardiology reviewed 1,033 U.S. heart transplants into infants over a 14-year period. Transplant survival was similar for the 66 cases involving donors who died from SIDS (6 percent of the total) and those whose donors had died from other causes.

The safety of using hearts from SIDS donors has been uncertain, but when donor hearts are selected carefully and have normal-appearing electrocardiograms and echocardiograms, “the outcomes are essentially no different from transplanting hearts from kids who died of other diseases,” says Almond. “If all the tests look normal, a heart that comes from a child who died of SIDS may be a reasonable way to expand the pool of eligible donors.”

And that would help alleviate a severe shortage: Infants listed for heart transplants are more likely to die on the waiting list than any other age group or category of organ recipient. Children’s heart transplant team, which conducts 15 to 20 transplants a year, typically has about 20 to 25 children on the waiting list. (Journal of Heart and Lung Transplantation, November.)

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

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