Frequently Asked Questions

Q. What happens after the assessment?

A. After the consultations and tests, the whole transplant team meets to decide if your child is a suitable candidate for a heart transplant. The team approach to care makes sure every treatment option for your child’s case will be discussed. If a transplant is recommended, the team will then decide how quickly your child needs it and when to put your child on a heart transplant waiting list.

The team will develop a treatment to give your child the best chance of having a successful transplant. If your child is able, they, along with you, should take part in making decisions about their plan. Receiving and living with a transplant is a big commitment, one that will stay with your child for the rest of his or her life. Your child will go on the transplant waiting list only if the transplant team agrees transplant is the best option for your child and you agree for your child to have the transplant.

Q. How does my child get on the heart transplant waiting list?

A. Once your child’s assessment is done and your transplant center has decided your child qualifies for a heart transplant, your child’s name and information will be placed on a national transplant waiting list managed by UNOS (United Network for Organ Sharing) A member of the transplant team will tell you when your child has been placed on this list. Like many families, you might have lots of questions about this process. Your transplant team will discuss everything with you and your family.

Q. What information about my child goes on the waiting list?

A. The waiting list will include details about your child’s:

  • Blood group
  • Weight
  • Height

Sometimes the waiting list will include information about what type of donor is acceptable for your child. If this important for your child, the transplant team will explain it to you.

Q. What happens when my child is listed for a heart transplant?

A. Your child will be given a listing “status.” This status is based on:

  • Your child’s current medical condition.
  • How much medical support your child needs for their condition.

Your child’s listing status can change over time based on how they are doing medically. The heart transplant team will discuss your child’s listing status with you. The UNOS wait list system attempts to meet the needs of the sickest children first and makes sure organs are allocated fairly. In the United States, for example, the wait list has three active status levels (1A, 1Band 2) and one inactive level (7). Each level has very specific guidelines, which are set by the UNOS.

Status 1A A child meets at least one of the following conditions:

  • Needs help breathing with a ventilator.
  • Needs support with a mechanical device such as ECMO or ventricular
  • assist device (VAD).
  • Is younger than 6 months old with heart disease and needs continuous prostaglandins (PGE).
  • Needs certain IV medications, known as inotropes, at a high dose or more than one.
  • Is expected to live less than 14 days without a heart transplant.

Status 1B A child meets at least one of the following conditions:

  • Needs IV medicine, known as inotropes, at a low dose.
  • Is younger than 6 months old and does not meet status 1A criteria.
  • Cannot grow at a certain rate.

Status 2 A child is due a heart transplant but does not meet the criteria for Status 1A or 1B.

Status 7 A child is inactive on the transplant list (they are too sick or too well to currently accept an organ).

Q. How does the transplant team find a heart?

A. Finding a heart for your child is called “organ matching.” In the United States, organ matching is managed by the United Network for Organ Sharing (UNOS).

Q. How do these organizations match a donor with my child?

A. They consider:

  • The donor’s blood group (O, A, B or AB).
  • The donor’s weight and height.
  • The donor’s age.
  • How quickly the organ can be transplanted once it is obtained from the donor
  • (including travel and operating time).
  • If your child has any antibodies that could attack the donor heart.

Hearts are then matched to the person according to their wait list status, with the sickest patients getting suitable organs first.

Q. Must my child’s blood group match the donor’s blood group?

A. In general, people who receive a heart need a donor whose blood group matches (or is compatible) with their own. It does not need to be exactly the same or identical. This is called an “ABO-compatible” transplant. However, in babies and sometimes in young children, it is possible to successfully transplant a heart from a donor with an incompatible blood group. This is called an “ABO incompatible” transplant and has been done successfully in many hospitals around the world. If this is an option for your child, the team will discuss it with you before your child is listed for a heart transplant.

Q. Where do donated hearts come from?

A. Heart donors can be anyone (a child or an adult) whose brain has been so damaged by injury or disease that the brain dies, even with the best medical care. When someone has reached this stage, it is called being “brain dead.” The donor might have been injured in a car accident, fall or by drowning, for instance, or they might have had a brain tumor or other serious medical condition affecting their brain.

Q. How long does it take to get a heart?

AThere is no way to know how long your child needs to wait for a donor heart; it could be a few days or many months to years. Your child’s wait time can depend on their age, weight, blood group and status on the waiting list. The wait for transplant can be an anxious and emotional one. It is important to continue to find balance and a sense of normalcy for yourself, your child and the rest of your family.

Waiting at Home

Transplants can happen at any time, day or night, depending on when a suitable donor organ is found. It is extremely important for the transplant center to have all your contact phone numbers (home, cell, work and school) so they can reach you. If you have a cell phone, keep it charged and with you at all times. If a family does not have a cell phone, some transplant centers can provide a pager to enable contact 24 hours a day. You will need to be ready to leave your home as soon as possible after the transplant center tells you an organ is available. Plan well in advance for this by:

  • Arranging reliable babysitting or child care for any other children.
  • Lining up other transportation if the person driving you is unavailable.
  • Organizing how to tell family members – we suggest you call one member who can then contact others.
  • Packing a bag for the hospital stay ahead of time. The bag may include toiletries, pajamas and some of your child’s personal items (such as pictures, a favorite blanket and a stuffed animal).

Waiting in the Hospital

If you are preparing to wait for transplant in the hospital, talk to the transplant team about bringing in personal items (such as a computer, gaming system, movies and personal photos) to make the hospital room feel more like home. We also recommend you bring enough clothing and toiletries for at least two to three weeks at a time.

Q. What happens while my child waits for a new heart?

A. Many families say the waiting period is the hardest part of the transplant journey. It is important to recognize the serious illness of one family member affects the whole family in different ways.

To prevent burnout, it is essential to care for yourself and your other family members as well as you can. While you wait for a new heart for your child, it is natural to experience a range offeelings, including anxiety, hope, anger, sadness and powerlessness. When so much is out of your control, use the supports available to you, whether family and friends, your faith community, professional supports (such as a counselor or therapist) and the transplant team. Also try to exercise, do activities you enjoy and take time for yourself.

Illness and hospital stays are both stressful, and a stay in the hospital can be difficult for a child of any age. Hospital stays disrupt a child’s life and can interfere with his/her normal development. While a child is in the hospital, he/she may miss his/her friends and family and be bored or afraid. Your child might also not understand why he/she is in the hospital or have false beliefs about what is happening to him/her.

Talk to the transplant team about meeting another transplant family with a child of similar age. This might help an older child to find out how they will look and feel after a transplant and give you the chance to ask questions about their past experiences on the transplant.

Activities

It is important your child and family do as many normal activities as possible during the waiting period. All activities will naturally depend on your child’s health. Your child’s cardiologist will help you decide what your child can or cannot do. If your child is waiting at home, it is important for them to go to school, even for only half days. The goal is to keep as normal a schedule as possible so your child can maintain their physical and emotional well-being. If your child’s physiotherapist has provided any exercise routine, follow it to keep your child as strong as possible before the heart transplant.

Waiting for a transplant in the hospital can be particularly hard, especially if you are from out of town. It often feels like your whole life has been put on hold. During this time, your child will follow a set schedule that often involves physical therapy, occupational therapy, speech therapy, therapeutic recreation (games or drawing) and school tutoring if applicable. Staff members at the hospital will work with you and your child to deal with the difficulties of a long hospital stay.

Q. How will a transplant change my child’s life?

A. A lot depends on what your child’s life was like before transplant. If he/she is a “normal” kid and has never taken medicine a day in his/her life, a transplant will make a big difference. On the other hand, if he/she has struggled with heart disease in the past, he/she may be familiar with medications, blood tests and frequent visits to the doctor. The biggest change in your child’s life is he/she now has a new heart and a chance for a full life. This gift of life is not without cost, however.

  • Your child will have to take medicine every day for the rest of his/her life to make sure his/her body does not reject the new heart.
  • Your child will need to have blood and other medical tests for the rest of his/her life to make sure his/her medicine is working well, to look for any side effects and to look for any signs of rejection and infection.
  • Your child will need to develop relationships with different healthcare professionals and learn to be responsible for his/her own heart health as he/she gets older and moves from pediatric to adult care. Good communication with the transplant team is essential to your child’s success.

Source: Pediatric Heart Transplants: A Guide for Patients and Families, Pediatric Heart Transplant Study Foundation, Children’s Cardiomyopathy Foundation