KidsMD Health Topics

Pediatric Heart Transplant

  • If your child’s end-stage heart dysfunction is no longer responding to medical treatment, a heart transplant may be an option to give him a longer and healthier life. Heart transplant is an operation that replaces a dysfunctional heart with a healthy heart from another person who has had brain death but whose heart is working normally.

    The Boston Children’s Hospital approach

    Since its inception in 1986, our Heart Transplant Program has become one of the largest and most experienced pediatric heart transplant programs in the country. Our program exists within the larger Cardiovascular Program, which has pioneered treatments that have dramatically improved the survival rate for fetuses, infants, children, teenagers and adults with heart defects. This means the shortest possible distance from discovery to your child’s bedside.

    The pediatric heart transplant team includes:

    • cardiac surgeons
    • cardiologists
    • advanced practice nurses
    • anesthesiologists
    • transplant pharmacists
    • radiologists
    • physical therapists
    • nutritionists
    • transplant coordinators

    Experts from additional sub-specialties throughout Children's join your child’s care team as needed. Child Life specialists, psychologists, social workers and resource specialists who are here to support your whole family before, during and after your child’s transplant.

    We are committed to working with you every step of the way.

    MORE HEARTS FOR MORE KIDS

    If your child has had previous heart surgery and/or blood transfusions, he may have developed antibodies that make him not a good candidate for certain donor hearts that become available.

    Children’s is one of a small number of centers that offers a procedure that can lower and neutralize the effect of these antibodies. This can increase the number of donor hearts that may be a good match for him, which in turn may shorten the amount of time that he needs to wait for a new heart.

    STEROID-FREE IMMUNOSUPPRESSANTS

    Here at Children’s, we offer an immunosuppression protocol that avoids the use of steroids—meaning fewer undesirable side effects for your child.

     

     TRANSITIONING FROM PEDIATRIC TO ADULT CARE
     More than 9 million children in the United States are living with a chronic illness. Every year, 500,000 of these children turn 18. As they join their fellow adolescents in struggling to achieve optimal independence, they also face a serious issue they may not be prepared for: the transition of their medical care. Read Children’s tips for helping kids – and their families – make this key transition.

    Heart transplant: Reviewed by T P Singh, MD, MSc
    © Boston Children’s Hospital, 2010

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  • We understand that you may have a lot of questions when your child may need a heart transplant.

    • How does it work?
    • How long will my child need to be hospitalized?
    • How will it affect my child long term?
    • What do we do next?

    We’ve tried to provide some answers to those questions here, and when you meet with our pediatric heart transplant specialists, we can explain your child’s condition fully.

    Potential complications

    A transplant can offer your child a longer and healthier life, but the procedure, like any surgery, does carry its own risks.

    What is rejection?

    Rejection is a normal—and, under most circumstances, healthy—reaction of the body’s immune system to a foreign object. When new heart is placed in your child's body, his immune system attacks it, not recognizing its intended purpose. To prevent this, your child will have to take life-long medications to weaken his immune system.

    How can I tell if my child is having rejection?

    It’s not always easy—many children have rejection without any symptoms at all. Your child’s transplant team will watch for these signs and show you what to look for. Some of the most common signs include:

    • fever
    • elevated heart rate
    • fast breathing rate
    • abdominal pain
    • irritability
    • poor appetite
    • vomiting

    If your child has any of these symptoms, you should call his doctor immediately.

    What medications are used to prevent rejection?

    Some of the most common medications used are:

    • cyclosporine
    • tacrolimus
    • mycophenolate mofetil
    • steroids (prednisone or methylprednisolone)
    • azathioprine
    • thymoglobulin

    Anti-rejection medications work by suppressing the immune system, but that means that your child will be at higher risk for infections. Our team will continually monitor his health through blood tests and other exams.

    What infections will my child be susceptible to?

    Some of the infections your child may be especially susceptible to include:

    This risk of infections is especially high during the first few months after the transplant. This is because higher doses of anti-rejection medicines are given, so the immune system is especially suppressed.

    Teens and transplants

    Being a teenager can be tough enough without having to cope with everything that comes with being a transplant patient. Along with the physical changes, teens also experience cognitive and emotional changes that influence their thoughts and behaviors, sometimes in unpredictable ways. Learn more about the special challenges your teen may face as a transplant patient and some ways you can help.

    Long-term outlook

    What’s the long-term outlook for my child?

    Most children who receive a heart transplant enjoy a high quality of life. They can return to school within three to six months of a heart transplant and have few activity restrictions. Survival rates vary based on a number of factors, but overall the survival rate is nearly 90 percent after one year and is approaching 70 percent after ten years.

    Resultson pediatric heart transplants continually improve as researchers at Children’s and elsewhere learn more about how the body deals with transplanted organs and search for ways to improve the success of transplants.

    Finding a donor heart for your child

    Where do transplanted organs come from?

    Transplanted hearts come from deceased organ donors. These are adults or children who have become critically ill, often following an accidental injury. A donor may come from any part of the United States.

    Who distributes the donor organs?

    The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. They oversee the distribution of most types of solid organ transplants. In addition to hearts, they also allocate livers, kidneys, pancreas, lungs and corneas.

    How are donor organs distributed?

    UNOS keeps a list of all the people in the United States who need a solid organ transplant. Each person on the list is given an allocation status, reflecting how urgently they need the transplant and the severity of their condition.

    Those who would benefit most are placed highest on the list, and given first priority when a donor organ becomes available. Children under 18 have priority over adults on the waiting list when a heart from an adolescent donor (aged 11 to 17) becomes available.

    When a donor heart becomes available:

    1. A computer searches all the people on the waiting list and creates a smaller list of people for whom the heart would be the appropriate size and blood type.
       
    2. The computer ranks the people on that smaller list according to their allocation status and wait time.
       
    3. The person at the top is considered first for the transplant. If he is not a good candidate, the next person on the list is considered, and so forth.

    When the decision is made to put your child on the transplant list, his transplant team will send his medical profile to UNOS, and keep them updated them as his condition changes.

    How long is the wait?

    We know that it’s agonizing to wait for a donor heart, but unfortunately, there’s no definite answer to this question. These organs can’t come from living donors, and children must also usually wait for an appropriately-sized heart – usually from another child. Your child may be on the list for weeks or months. You will be given a beeper for us to be able to reach you at all times.

    How many children are on the heart transplant list?

    According to the United Network for Organ Sharing’s recent 2010 statistics, 251 children were waiting for a heart transplant in the United States.

    What happens while we wait?

    We recommend that you use your waiting time to prepare for your child's heart transplant. A donor heart can become available at any time, day or night, and it's crucial to plan ahead for when this occurs. Here are some things to keep in mind:

    1. It’s important that you always leave a number where you can be reached if you’re away from home so our transplant team can reach you at all times.
       
    2. When a heart becomes available, you’ll need to get to Children’s within two to three hours. Keep your packed hospital bag handy — including an extra 24-hour supply of your medications — and arrange transportation to the transplant center in advance.
       
    3. If you’re organizing your own transportation on the day of surgery, consideration must be given to the possibility of inclement weather, distance and rush-hour traffic.
       
    4. Depending on how far you live from Children’s, you may need to relocate to be closer to the hospital if you cannot get to the hospital within two to three hours of our call.
       
    5. Plan well in advance for other factors including:
      • baby-sitting/child care for your other children
         
      • an alternative transportation plan in case the person driving you is unavailable
         
      • phone calls to family members - we suggest you call one family member so they in turn can contact other family members.
         
      • packing a bag for the hospital stay. This may include: toiletries, pajamas, personal items (pictures, favorite blanket, stuffed animal).

    Waiting for an available donor heart is often the most stressful time for our patients and their families. Please remember that we are always here to offer you support and resources should you need it.

    How will I be notified when a donor organ is available?

    When a donor organ that seems to be a good match for your child becomes available, we will notify you by phone or pager. You’ll be asked to come to the hospital immediately.

    When you receive the call to come to the hospital, be prepared to:

    • ask about any medications your child should take before coming to the hospital
    • let us know if your child has a temperature or is currently sick
    • not allow your child to eat or drink anything after receiving the call
    • leave your house as soon as possible

    Keep in mind that it is possible that you may be sent home without a heart transplant if one or both of the following things occur:

    • The team discovers a problem with the new heart.
    • The team finds that your child has a condition that could jeopardize his health or the transplant’s chance of success.

    FAQ

    Q: What’s the long-term outlook for my child?

    A: Most children who receive a heart transplant enjoy a high quality of life. Survival rates vary based on a number of factors, but overall the survival rate is nearly 90 percent after one year and is approaching 70 percent after ten years.

    Q: How long will it take to get a new heart?

    A: There’s no way to know for sure, and the time for a child waiting for a donor heart can vary considerably, from days to over six months. We know it’s hard to wait, and can direct you to resources and community support groups.

    Q: Will my child be able to return to school after the transplant?

    A: Most of our children do quite well and are able to return to school within three to six months after the transplant. While a few precautions need to be taken, we encourage them to lead full and happy lives – to go to school, play sports, spend time with friends and enjoy hobbies.

    Q: What will happen after the transplant?

    A: Your child will take medications to prevent the new heart from being rejected for the rest of his life.  We’ll also have follow-up appointments here at Children’s, so we can monitor his health, change medications if needed and stay in touch with your family. Each child’s transplant experience is different, but follow-up appointments are often:

    • twice a week for the first month
    • once a week for the second month
    • once every other week for the third month
    • every 3 months after the first year

    Since your child’s immune system will be compromised, your family may need to make some adjustments to protect his health. Read more about how to help keep your child safe.

    Questions to ask your doctor

    You and your family are key players in your child’s medical care. It’s important that you share your observations and ideas with your child’s transplant team and that you understand their recommendations.

    You probably already have some ideas and questions on your mind, but it can be easy to forget the questions you wanted to ask when you’re talking to your child’s doctors. It’s often helpful to jot them down ahead of time so to make sure that all of your concerns have been addressed.

    If your child is old enough, you may want to suggest that he write down what he wants to ask his health care provider, too.

    Some of the questions you may want to ask include:

    • Is a heart transplant the best option for my child? What other treatments might be available?
       
    • How many heart transplants have been done at this institution?
       
    • How many by the surgeon who would be performing my child’s transplant? How long have they been doing this type of surgery?
       
    • Are there factors other than my child’s health that go into the decision of whether to move forward with the transplant?
       
    • Will our health insurance cover a heart transplant? What questions about finance will I need to have answered?
    CHILD LIFE SPECIALISTS
    "Don't forget to tell them the rules," 7-year-old Lia DiFronzo says to Amber Soulvie, her Child Life specialist. Read more about how our Child Life specialists help children like Lia.
    THE EXPERIENCE JOURNAL
    Designed by Children’s psychiatrist-in-chief David DeMaso, MD and members of his team, the Experience Journal is an online collection of thoughts, reflections and advice from kids, parents and other caregivers about the transplant experience.
  • If it seems like a heart transplant might be an option for your child, we’ll ask you to come to the hospital for an informational visit. Your family will meet our pediatric heart transplant team, and you’ll be invited to ask questions and share any concerns you may have. We encourage you to bring family and close friends to this meeting.

    If you and the transplant team agree that a heart transplant may benefit your child, your child will be scheduled for an evaluation. This is an extensive array of tests that are usually conducted over the course of four to five days. While this may seem like a lot, these tests are necessary in order for us to:

    • confirm that a transplant is the appropriate treatment
    • determine how urgent the need for a transplant is
    • make sure that the donor organ your child receives will be a good match

    The evaluation may be done as an outpatient or as inpatient based on the urgency for transplant. 

    Who will we meet with during the transplant evaluation?

    A transplant is a complex procedure that touches different medical specialties – that’s why you and your child will meet Boston Children’s Hospital experts from a number of different areas, including:

    1. Cardiac transplant surgery: These are the doctors who specialize in heart transplant surgery and will perform the transplant.
       
    2. Transplant cardiology: The transplant cardiologist is a physician who specializes in the treatment of heart failure, medical evaluation for transplant and in taking care of patients long-term after the transplant.
       
    3. Transplant nurse coordinator: This is a nurse who specializes in caring for heart transplant patients and will organize all aspects of your child’s care before and after the transplant.
       
    4. Pulmonology: The pulmonologist (lung doctor) will assess your child’s lung function.
       
    5. Anesthesia: The anesthesiologist will review your child's medical and/or surgical histories and identify any risk factors associated with anesthesia.
       
    6. Infectious disease: Our infectious disease specialist will perform a physical exam and review your child's vaccination records. We will want to know if your child has any particular environmental exposures or has recently traveled to a foreign country.
       
    7. Psychiatry: A psychiatrist or psychologist will meet with you and your child to discuss coping strategies, stress management and family life.
       
    8. Social services: The transplant social worker will meet with you and your family to identify support systems and discuss your feelings about transplant. We can provide you with information about resources related to finances, relocation expenses and support groups.
       
    9. Nutrition: Our registered dietician will evaluate your child's diet and nutritional requirements. Maintaining a healthy lifestyle and good nutrition before the transplant is very important.
       
    10. Physical therapy: The physical therapist will discuss the importance of exercising before transplant in a way that is appropriate for your child. The goal of developing an exercise plan is to help increase endurance and strength.
       
    11. Dentist: Before a transplant can be considered, your child will meet with her own dentist or one here at the hospital. The goal is to treat any cavities, infections or tooth abscesses before transplant, since these conditions can be problematic once your child begins to take medicine to suppress his immune system.

    What tests are used during the evaluation?

    Your child’s specialists will order different tests to understand his past exposure to infections, determine functionality of organs and make sure a donor match is compatible. These types of tests may include:

    1. Blood

    • blood type (a donor and recipient must have compatible blood)

    2. Heart

    3. Infections

    Blood and skin tests will check for exposure to infections including:

    4. Other kinds of tests

    • pulmonary (lung) function tests
    • liver and kidney function tests
    • urine tests

    After these consultations and tests, our transplant team will meet as a group to determine whether your child is a good candidate for a heart transplant. Our multidisciplinary approach to care ensures that your child’s case will be given thoughtful discussion of every treatment possibility.

    If your child is a transplant candidate, we’ll make sure your family is fully educated about the risks and benefits, and your child will be placed on the United Network for Organ Sharing (UNOS) list.

    CAREPAGES
    Keep family and friends up to date during your child’s treatment by creating a free Children’s CarePage.
  • Once you’ve been notified that a donor heart has been found, things move very quickly. Our team will make sure that you and your family are comfortable and informed. It’s normal to be nervous, but you can rest assured that your child is in good hands with us.

    What happens when we arrive at the hospital?

    When you arrive at the hospital, you’ll go directly to the Inpatient Unit. Here, members of the transplant team (including a cardiac anesthesiologist) will perform a physical exam and run some tests to make sure your child is ready to go to the operating room.

    While this preparation is going on, a surgical team will be transporting the donor heart to Children’s Hospital Boston. The time of your child’s operation is planned to match the team's arrival back to the hospital.

    What happens in the operating room?

    The anesthesiologist will give your child anesthesia, so that he falls asleep. His chest will be thoroughly cleaned with a special cleansing solution to minimize the possibility of infection.


    Heart transplant surgery aided by a heart/lung bypass machine.

    Next, the transplant surgeon will open up your child’s chest and connect him to a heart-lung bypass machine, to keep oxygen-rich blood flowing through his body. The surgeon will remove the diseased heart, put the donor heart in its place, and reconnect the blood vessels. Usually, the new heart begins to beat once blood flow is restored, but sometimes an electric shock is needed to help it start beating.

    How long will the transplant operation take?

    Each child is different, but a heart transplant operation usually takes around four to six hours.

    What happens after surgery?

    After the surgery, your child will go to the cardiac intensive care unit (CICU) to be monitored closely. After his condition is stable, your family is welcome to visit. Read more about the CICU.

    While your child is in the CICU, members of the transplant team will educate you and your family on all aspects of caring for your child after his operation. This will include information about medications, activity, follow-up, diet and any other specific instructions.

    Follow up

    After the transplant, your child’s team will want to keep a close eye on him through follow-up visits to make sure that everything is going well. These visits might include:

    These visits are essential to make sure your child’s medicine is at the right dosage, catch and treat any complications that might arise and make sure that your family and your child’s team remain in touch. While your child’s transplant team will tell you how often they will need to see your child, many post-transplant patients are seen:

    • twice a week for the first month
    • once a week for the second month
    • once every other week for the third month
    • every 3 months after the first year

    Once your child is stable, follow-up visits will occur between two and four times per year.

    How can I help keep my child safe after the transplant?

    We understand that you will want to do everything possible to protect your child and his new heart, and there are some steps you can take to minimize the risk of infection.

    Coping and support

    We understand how disruptive and frightening a heart transplant can be - not only for your child, but for your whole family. From your first visit, you’ll work with a team of professionals who are committed to supporting you.

    Patient education: Our nurses will be on hand to walk you through your child’s treatment and help answer any questions you may have. They will also reach out to you by phone, continuing the care and support you received while at Children’s.

    Parent to parent: Want to talk with someone whose child has had a heart transplant? We may be able to put you in touch with other families who can share their experience.

    Faith-based support: If you are in need of spiritual support, we will help connect you with the Children’s chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.

    Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child’s condition, stresses relating to waiting for an organ, and dealing with financial difficulties.

    And on our For Patients and Families site, you can read all you need to know about:

    • getting to Children’s
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family
    INTEGRATIVE THERAPIES
    Our patient-centered approach means that we want your child to not only get better, but also feel good along the way. Throughout the hospital, you¹ll find clinicians trained in therapies that can make your child feel more comfortable, learn to shift focus away from pain and enjoy some peaceful moments during what may be an anxious time. Read more about how acupuncture, guided meditation, guided imagery, massage, Reiki and therapeutic touch could help your child.
    BACK TO SCHOOL PROGRAM

    At age 11, Ronald (R.J.) Agostinelli was diagnosed with acute lymphoblastic leukemia, a cancer of the white blood cells. He missed seven months of elementary school while having chemotherapy. Here, R.J. talks about what it was like returning to his class after a long absence.

  • 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’S JOURNEY
    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.
    INFANTS WHO DIE FROM SIDS MAY BE VIABLE HEART DONORS

    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.)

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