For some children with heart disease, even the most aggressive treatment with medication or conventional cardiac surgery is not enough to restore health and maintain a good quality of life. These children may be considered for heart transplantation.
The most common reasons for heart transplantation in infants, children and young adults include:
CHOP has performed more than 200 heart transplants since the inception of our Heart-Lung Transplant Program in 1990, with outcomes among the best.
If your child is referred to our Heart Transplant Program, you and your child will participate in an intensive evaluation. Our goal is not only to assess your child for transplantation, but to explore other medical and surgical treatment options.
You and your child will spend a full day meeting with members of our team, including a transplant cardiologist, advanced practice nurse, social worker and psychologist.
Your child will probably undergo cardiac catheterization and/or other imaging studies (echocardiogram, cardiac MRI) for diagnostic purposes. The heart transplant evaluation will also include specific blood tests to assess your child's immunologic function, liver and kidney function, and exposure to viruses and vaccines.
If the pediatric heart transplant team determines that your child is a candidate for a pediatric heart transplant, your child will be listed through the United Network of Organ Sharing (UNOS), which matches solid organs (heart, lungs, liver, kidneys, intestines) with adults and children in the United States.
Children are listed for heart transplantation according to medical urgency - sicker children typically receive higher priority in a nationally standardized system regulated by UNOS. Some children are well enough to wait for their new hearts at home. However, many children with severe end-stage heart failure await transplantation in the hospital.
Our pediatric heart transplant team is experienced in providing the full range of cardiovascular support from intravenous medications to full mechanical support of the heart with extracorporeal mechanical oxygenation (ECMO) and/or ventricular assist devices (VADs) if needed, to infants and children of all ages.
This can be a difficult time for both your child and family. Our team works to help your child remain in the best possible health and to support your family through the waiting period with close medical monitoring, nutritional guidance and psychological support.
We also encourage your child, if able, to participate in the Cardiac Center's pre-transplant exercise program, led by Stephen Paridon, MD, director of the Exercise Physiology Laboratory. Appropriate exercise before transplantation can help speed recovery afterwards.
Because of the shortage of donor organs, the waiting time can be long and unpredictable; some children do not survive it. That's why CHOP has joined the Gift of Life Donor Program in encouraging individuals to register today as organ and tissue donors.
The post-transplant period can be challenging for families. As you support your child, you may feel many emotions. In addition to relief and renewed hope for your child's future, you may have new concerns about keeping her healthy.
The Cardiac Center has developed a comprehensive post-transplant education program for parents and other family members. Led by pediatric heart transplant nurse practitioners, the program includes information on:
We require that at least two responsible adults receive post-transplant education for each child.
After heart transplantation, the major health concern for your child will be rejection of the new heart. Medications will be monitored and adjusted to suppress your child's immune system (and thus prevent rejection) without putting your child at undue risk for infection and other side effects.
We will also monitor your child with regular echocardiographic studies and heart biopsies. The biopsy procedure allows us to inspect the heart muscle for signs of rejection.
The majority of children who receive new hearts resume a relatively normal and age-appropriate lifestyle. They are able to attend school, own pets, and participate in team sports and other active pursuits. Our team will work with your family to determine the best lifestyle for your child.
If heart transplantation is being considered, please request an evaluation at Children's Hospital as early as possible by calling 267-426-9600 or sending us an email at firstname.lastname@example.org.
If you are a physician and would like to refer a patient, please call 215-590-6051 or send an email to Joseph Rossano, MD, Medical Director, Heart Transplant Programs, or to Karen McCandless, Nurse Practitioner.