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.
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:
- elevated heart rate
- fast breathing rate
- abdominal pain
- poor appetite
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:
- mycophenolate mofetil
- steroids (prednisone or methylprednisolone)
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.
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:
- 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.
- The computer ranks the people on that smaller list according to their allocation status and wait time.
- 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:
- 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.
- 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.
- 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.
- 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.
- 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.
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.