By the time a child has completed the transplant assessment and has been placed on the heart transplant wait list, they will already have undergone a lot of medical testing.
During this time, however, you will be asked to bring your child to the Transplant Clinic for follow-up visits. These visits are intended to check that your child’s condition remains the same and that they still need and are ready for a new heart.
You will need to call the transplant coordinator anytime your child has a fever or any other signs of illness such as a runny nose, cough, vomiting or diarrhea. If your child develops an infection while waiting for a donor heart, he/she will not be able to have the transplant until the infection is cured. This is due to the high doses of immunosuppressant medications that are given at the time of transplant which can allow infection to overwhelm your child’s body.
Waiting in the hospital
A child waiting in the hospital for a heart transplant will have the same tests as a child waiting at home, but may also have additional blood work, X-rays or other testing. This depends on the health problems they have while they are waiting.
Sometimes a child may need to have repeat heart catheterization to measure the pressure in their heart and lungs. This usually happens if the child has been waiting for a long time or if there has been a major change in their health.
How long does it take to get a heart?
There 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 team 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, the team will help you make other arrangements.
The family must be within a two-hour drive of the Children’s Mercy Adele Hall Campus at 2401 Gillham, Kansas City, Mo. at all times while waiting for a donor heart. This will allow enough time to get to the hospital when a heart becomes available. If your home is outside this two-hour limit, your child and one parent may be required to live in the Kansas City area while waiting. Our social worker can help with housing during this time.
You will need to be ready to leave your home as soon as possible after the transplant coordinator 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)
have cash available for gas money, cab fare, etc., so you will be able to leave at a moment’s notice.
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.
What happens while my child waits for a new heart?
Emotions and Feelings
Many families say the waiting period is the hardest part of the transplant journey. It is important to recognize that 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 of feelings, 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 at any age. Hospital stays disrupt a child’s life and can interfere with their normal development. While they are in the hospital, children may miss their friends and be bored or afraid. They might also not understand why they are in the hospital or have false beliefs about what is happening to them.
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 journey.
It is important that 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 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 physical therapist 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.
The question of going away for a vacation may arise while your child is listed for a heart transplant. This is often possible, but you will need to discuss it with the transplant team. Sometimes going on vacation means your child will be put “on hold” on the transplant waiting list while you are away. This could delay the matching of a donor to your child, but you and your family may decide you can manage this risk if a vacation is needed to maintain a certain quality of life for the whole family. Your transplant team will help you to make this decision.
Patients waiting for a heart transplant often find it hard to take in enough energy (calories) to grow. For instance, infants and young children may breathe very quickly. This both burns more calories and makes it hard to drink. Children may also be limited in the amount they are allowed to drink. In addition, poor heart function can cause gut problems such as vomiting, gagging and retching in some children. Patients with cardiomyopathy (weak heart muscles) often develop heart failure quickly. Usually these patients need more calories as their heart is working harder, but they may be unable to take them if their appetite is small and they are having medical therapies. The dietitian will use various methods to help your child stay nourished before and after transplant.
Boosting nutrition for children of different ages
For infants and young children with heart disease, breast milk or formula may be “concentrated” to provide more calories and nutrients in less volume. This is usually done by adding some infant formula to your breast milk and/or following a recipe developed by the dietitian. Many types and flavors of supplements are available to improve the weight of an older child on the waiting list. To help your child take supplements, try offering them in small quantities throughout the day rather than in a large portion. Also try offering them cold rather than at room temperature and pour them into a glass or cup instead of leaving them in the can. Your dietitian can advise you about different supplements.
Sometimes your child might need to be fed through a feeding tube. This tube can be placed in their nose or directly into their stomach. Feeding tubes are helpful if your child gets tired before they drink enough fluid or if there are strict limits on the fluids they can drink.
The dietitian will work with you and your child to develop a feeding schedule allowing your child to eat and drink if they wish and still get enough energy and nutrients to grow. For example, it may be possible to allow your child to eat and drink during the day and then get the rest of the nutrition they need through the feeding tube overnight.
What happens if my child gets sicker while waiting for a heart?
Once your child is placed on the transplant waiting list, they will be reviewed regularly by the transplant team. If your child’s heart becomes sicker and your child needs more medical care, they may be moved to a more urgent listing status. This can mean:
being admitted to the hospital to wait
needing continuous intravenous (IV) medications
getting help with breathing from oxygen or a ventilator machine
getting support from machines called ventricular assist devices, which take over the work of the heart
If a change in your child’s condition makes a successful heart transplant less likely, your child may be removed from the list either for a short time (for example, while they receive treatment for an infection) or permanently (for example, if there is major organ failure). If this happens, the transplant team will explain this to you and your child and give you a plan.
How will a transplant change my child’s life?
A lot depends on what your child’s life was like before transplant. If they are a “normal” kid and have never taken medicine a day in their life, a transplant will make a big difference. On the other hand, if they have struggled with heart disease in the past, they may be familiar with medications, blood tests and frequent visits to the doctor.
The biggest change in your child’s life is they now have 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 medicines every day for the rest of their life to make sure their body does not reject the new heart.
They will need to have blood and other medical tests for the rest of their life to make sure their medicine is working well, to look for any side effects and to look for any signs of rejection and infection.
They will need to develop relationships with different health care professionals and learn to be responsible for their own heart health as they get older and move from pediatric to adult care. Good communication with the transplant team is essential to their success.