With over three decades of experience providing heart transplants to infants, children, teens and young adults, the IU Health Transplant at Riley Children's Health multidisciplinary team of pediatric cardiothoracic surgeons, pediatric cardiologists, specialized care coordinators, social workers and pharmacists provides highly skilled and compassionate care. Whether your child can wait at home for a donor's heart or if hospitalization is needed, our team provides expert care that meets your physical and emotional needs. To help reduce wait times for a donor heart, an ABO-incompatible transplant is offered for babies.
Our program works with the adult heart transplant program at IU Health to provide lifesaving heart transplants to adults with congenital heart disease that are experiencing heart failure. These two programs provide a seamless care process with outstanding long-term survival outcomes.
Our team carefully considers if a heart transplant will improve your child’s quality of life before placing them on the heart transplant list.
After being referred to Riley at IU Health, the heart transplant team will perform a comprehensive evaluation to see that your child’s heart transplant is successful. This evaluation includes:
- Blood Tests. These are used to evaluate the function of other vital organs (kidneys, liver), the levels of antibodies to fight several infectious conditions (such as Hepatitis B) and to determine your child’s blood type.
- PRA (percent reactive antibody) Test. This test looks for the presence of human leukocyte antigen (HLA) antibody in the blood which can be used to determine potential organ matches.
- Urine Analysis. This is used to determine if there’s an infection and to measure kidney function.
- Echocardiogram. This is an ultrasound of the heart to evaluate your child’s current heart function.
- Electrocardiogram (EKG). An EKG measures the electrical signals of the heart to look at the heart rhythm and is a simple and painless procedure.
- Heart Catheterization. This may be requested by the transplant team to measure pressures and may also be done to obtain a biopsy.
- Ultrasounds or CT Scans. These tests are used to look at other organs and determine if there are any abnormalities.
- Dental evaluation. A dentist will assess your child’s dental health to determine if there is an infection that requires treatment.
- Psychosocial assessment. A social worker will ensure a strong family support system exists to help provide the care and assistance your child will need before and after the transplant.
Other tests and consults from other specialties might be needed depending on your child’s health and condition.
After the evaluation, the transplant team will meet to review and discuss the results. One of the physicians or the transplant coordinator will notify you when a decision has been made regarding whether a transplant should be a treatment option.
If a transplant is the best treatment option, the transplant coordinator will contact you and add your child to the national transplant waiting list, which is managed by the United Network for Organ Sharing (UNOS).
Waiting for a donated organ to become available can be stressful whether you are waiting in the hospital or at home. While your child waits for a donor heart, your family will continue to meet with your transplant team to learn about every aspect of the transplant process and receive support.
The Riley Heart Transplant Support Group is a virtual monthly meeting for all pre-and post-transplant caregivers. It provides an opportunity for caregivers to connect, learn from their experiences and gain support in their transplant journeys. Discussion topics vary each month. For more information, please speak to your child’s transplant coordinator or social worker.
Preparing for Surgery
Preparing for Surgery
When a heart becomes available, you and your child will be notified to come to the hospital right away if waiting at home. Your child will not be able to eat or drink anything until the surgery time has been decided. When you’ve arrived at Riley Hospital for Children, head to the admitting office and you will be taken to the inpatient unit to begin your child’s pre-operative preparations. Several procedures will be done to prepare your child for surgery, including:
- Chest x-ray and bloodwork
- Antimicrobial soap scrub on the chest to remove any bacteria on the skin
- Completing consent forms if you have not done so already
- Placing an IV (intravenous line) before going to the operating room
The surgery team will begin preparing your child for surgery while the donor heart is being transported to the hospital. Medicine will be given through an IV line to help your child relax and then anesthesia will be started. The actual surgical procedure typically takes six to eight hours. If your child has had previous heart surgery or has been on a ventricular assist device (VAD), it may take longer as scar tissue will need to be removed.
During surgery, a breathing tube will be placed and is attached to a ventilator to help control breathing. An incision will be made in the middle of the chest. While this incision looks rather large at first, it typically fades over time as it heals.
While in the operating room, your child will receive the first dose of immunosuppression medications. The medication begins working immediately to prevent rejection of the new heart.
After surgery, your child will be taken directly to the Cardiac Intensive Care Unit (CVICU). Several IV medications and a temporary pacemaker will be used to help strengthen the heart by maintaining its rate and rhythm. It may take several days for the new heart to recover from the stress of the transplant. The IV medications and pacemaker will be gradually reduced as the heart recovers. During the immediate post-surgery recovery:
- The care team will monitor your child very closely. Blood tests will be taken frequently. There will be several lines, tubes and medications that will help keep your child stable and allow for recovery. These will be slowly reduced as your child recovers over the next few days and/or weeks.
- Your child will remain on a ventilator until the team feels they are strong enough to breathe on their own.
- Once ready, your child will be transferred to the step-down unit for continued monitoring until stable and strong enough to go home. You will receive education about your child’s new heart, medications, diet and how to contact your child's care team with any questions once at home.
The transplant team at Riley at IU Health is always available for any questions or any issues that arise post-transplant.
Returning home can be both an exciting and anxious time. Below are some guidelines to follow upon returning home after a heart transplant:
- Encourage your child to walk; the activity can help restore strength and maintain cardiac function.
- Your child will take anti-rejection (immunosuppressive) medicines for life. It is extremely important that these medications are taken as directed and that they are not missed. It is also very important that these medications are taken on time.
- Eating a healthy, balanced diet will give your child the needed calories for recovery and health.
- Frequent follow-up visits are required to monitor the function of the new heart and check for any complications. Over time, the frequency of these follow-up visits will decrease.
Key Points to Remember
Key Points to Remember
- A heart transplant is performed as a treatment option for some serious heart conditions.
- An extensive medical evaluation of your child is performed by the Pediatric Cardiac Transplant team at Riley Children’s Health to ensure that a heart transplant is the best treatment option.
- Patients on the heart transplant list are ranked by their original condition and level of needed support at the time. The length of time someone waits on the list varies from hours to days to weeks to months. Our team is here to support you through the wait.
- A donor heart can become available at any time of the day or night. It is important to always have your phone with you and fully charged so that you can be contacted immediately.
- After transplant surgery, your child will remain in the hospital until they are healthy enough to go home.
- Your child will be on many medications for the rest of their life. Missing medications can lead to rejection and failure of the transplanted heart.
- Heart transplants are very successful, and children enjoy an excellent quality of life after their transplants.
Ava Graham has been inpatient at Riley for 16 months as doctors and transplant coordinators work to match her with the gift of life.Continue reading
An 11-year-old received a fun farewell this week after being a patient for more than 300 days waiting for a heart transplant.Continue reading