Although very rare, sometimes children are born with heart defects that are too serious to be fixed with surgery or other treatment. These children may need a heart transplant. A transplant is when a child’s damaged heart is replaced with a healthy, donated heart from a child that has died.
If the procedure is successful, the child that has received the transplant will have greatly improved heart function and blood flow.
A heart transplant can save your child’s life, but it has many risks, so it’s a last resort for children that do not respond to any other treatments. If your child needs heart transplant surgery, they might need to take medicine for the rest of their life, and will have many follow up visits with their doctor and other specialists, to make sure they heal properly.
Although it is a life-saving measure, a heart transplant is considered to be a last-resort treatment for children that do not respond to other treatments. A heart transplant is a high-risk, open-heart surgery, which can have many complications, including:
- Bleeding (during or after the surgery)
- Heart attack
- Blood clots (which can cause a heart attack or a stroke)
- Lung problems
- Rejection of the donor heart (your child’s immune system sees the new heart as a foreign object and attacks it)
If your child needs a heart transplant, there are many things that will need to be done in order to prepare them for the procedure.
Your child’s doctor will probably refer your child to see a specialist at a transplant center for additional evaluation. In this evaluation, they will help determine if your child is a good candidate for a transplant. If they find that your child is a good candidate for a transplant, the specialist at the transplant center will help your family create a plan for preparation, and also help you get your child on a waiting list for an organ transplant.
Your transplant center may also have support groups that are available, and designed to help people as they support their child while they wait for a donor organ to be available, and while they heal from the procedure.
Your transplant center can also discuss specific risks and benefits of the recommended procedure with you, and help you understand better what to expect before, during, and after the procedure. Make sure you ask any questions you might have to help you understand what you need to know.
It is important to understand that there are many people in the U.S. that are waiting for a heart transplant. This means that it may be a while before the procedure can be performed. Sometimes children die before they are able to receive a transplant.
While your child is on the waiting list, the team of specialists will closely monitor your child’s health so that they are ready when an organ becomes available. If your child has an infection, or develops some other significant medical condition, they won’t be able to have a transplant until they are fully recovered. In some cases, your transplant center may remove your child’s name from the transplant list until they get better.
Your child’s team of specialists may recommend other steps to help your child’s heart and organs remain as healthy as possible, such as:
- Participation in a cardiac rehabilitation program. This is an exercise program that is designed to help your child’s heart get stronger before and after their transplant
- If your child’s organs start to fail, they may recommend the implantation of a medical device, such as a ventricular [ven-trick-YOU-lar] assist device (VAD), while you wait for a donor organ to be available.
When a donor organ becomes available, the timeframe to use it is very limited. Most of the time, a heart transplant needs to happen within 4 hours from when the organ was removed from the donor’s body.
This means that you and your child will need to be prepared to act quickly at any time as it’s not possible to predict when a donor organ may become available. It is recommended that you keep bags packed for your child, as well as any family members that may go to the hospital with your child, so that you are ready to leave as soon as you are told that an organ is available.
When you get to the hospital, your doctor will do some tests to ensure that the donor heart will be a good match for your child. If the donor heart is not a good match, you will need to take your child home and wait for a heart that is a better match.
If your doctors find that the heart is a good match, and you decide to move forward with the transplant, your child will need to have surgery right after the final evaluation.
Preparing for Surgery
A heart transplant is an open-heart surgery, and can take several hours to complete. When your child is ready to receive a transplant, the medical team will take these steps to prepare your child for surgery:
- Change them into clothes that are provided by the hospital.
- Put them child to sleep with a general anesthesia.
- Take them to the operating room.
- Connect them to a heart-lung machine, which will keep blood flowing throughout your child’s body during the surgery.
During the Procedure
Heart transplant surgeries might be different for each person, but these are the general steps the surgical team will take:
- Your child’s chest will be opened to gain access to the heart.
- Your child’s heart will be removed and replaced with the donor heart.
- The donor heart is stitched to the arteries that feed the heart.
- If necessary, the surgeon may also replace your child’s lungs with a pair of donor lungs.
Usually, the new heart will start beating right away, and start flowing blood through the body. If the new heart does not start beating right away, sometimes an electric shock will be needed to start the heart.
After the procedure, your child will be taken to a recovery room, where they will be observed until the anesthesia wears off. They will have to stay at the hospital for several days while they wait to heal. During this time your child will:
- Likely remain on a ventilator, which will help them breathe.
- Be given medicine regularly to help with the pain.
- Have drain tubes placed in their chest to help drain fluids from around the lungs and heart.
- Be given other fluids via an IV to keep them hydrated and healthy.
Your child will need to stay in the Intensive Care Unit (ICU) at hospital for a few days after the procedure to make sure they are healing well. After your child is released from the hospital, there will be several follow-up visits to make sure your child is healing well, and also to make sure that your child is not rejecting the new donor heart.
Make sure to talk to your doctor about what to expect for follow-ups after your child’s procedure is complete.