Treatments and Services
Heart Transplant Program
In a heart transplant, a child’s diseased heart is replaced with a healthy heart from a donor.
If your child’s heart is failing, doctors will first see if it can be improved enough by medicine, cardiac catheterization procedures or surgery. A heart transplant may be needed if these treatments do not fix the heart failure.
Heart failure happens when the heart is unable to pump enough blood to meet the body’s needs.
There are various options for treating heart failure. But when all other medical and surgical options have been explored, your child’s doctors may recommend heart transplant.
Heart disease includes a number of conditions that affect the structures or functions of the heart.
Some common diseases and conditions that can lead to heart failure include:
Heart Transplant at Seattle Children’s
The Heart Transplant Program at Seattle Children’s provides compassionate, state-of-the-art care before, during and after transplant, with outcomes that are among the best in the nation.
We treat infants, children, teens and young adults from birth through age 21. Our program was established in 1994, and since then our team has performed more than 220 pediatric heart transplants. Optum’s Clinical Sciences Institute lists our program as a Center of Excellence.
The transplant process requires extensive preparation and lifelong follow-up care. Our team has the medical and surgical expertise to handle even the most complex cases. If your child needs a heart transplant, Seattle Children’s is the best place to be.
Seattle Children’s post-transplant 1- and 3-year survival rates are among the best in the nation.
Our Heart Failure Program is the only one in the Pacific Northwest with the depth of expertise to offer every type of therapy for heart failure. We have the medical and surgical expertise, and the latest technology, to handle the most complex cases. Often this means we can avoid or delay a transplant.
Our Extracorporeal Life Support (ECLS) Program provides life support when a child’s heart or lungs are not working properly or need a rest.
Our Ventricular Assist Devices (VAD) Program provides more durable support for the failing ventricle.
In addition to expert surgical techniques, our medical care includes state-of-the-art immunogenetics, blood banking and immunological treatment so children who otherwise would not qualify for a heart transplant can be successfully transplanted.
Nationally, the average wait time for an organ is 7 months. At Seattle Children’s, the average wait time is 3½ months. One reason is that for some patients we are able to accept and successfully transplant a wider range of donor hearts – larger or smaller, or coming from farther away – than most other centers. For a very ill child, shortening the wait time may save their life.
We offer ABO blood group–mismatched transplants so babies do not have to wait as long for a transplant.
If a child has type O blood, some centers will only transplant a donor heart that is also type O. We will accept O, AB, A or B for children less than 2 years old, who typically wait the longest for a donor heart. Our outcomes for ABO-incompatible (mismatched) transplants are just as excellent as ABO-compatible transplants.
We work with our blood bank to carefully prepare our patients so they are able to receive an ABO-incompatible transplant. Our methods can minimize antibodies attacking the new heart (this is called rejection).
Children who have had many surgeries may develop antibodies to certain human leukocyte antigens (HLAs). HLAs help determine whether an organ is a good match for a patient. If a child already has antibodies, they are likely to quickly attack any donor organ that contains those HLAs.
Children who are HLA-sensitized usually wait longer than others for an acceptable organ. They are at higher risk for rejecting their new heart.
At Seattle Children’s, we offer transplant as an option for children who are HLA-sensitized in properly selected cases. We use advanced techniques to determine the best donor match for each child. After transplant, we use advanced B-cell targeted immunosuppression therapy to keep the child’s body from rejecting the new heart.
We are committed to providing optimal growth and quality of life for your child. The Heart Transplant Clinic provides support and follow-up services, including education and counseling. Your child will visit the clinic for most appointments before and after the transplantation surgery.
Pediatric Heart Transplant Team
Your child will be cared for by the same team of doctors, nurses and technicians before, during and after transplant. Our highly skilled specialists are very experienced in the surgical care and medical management of pediatric heart transplant patients. They include pediatric:
- Heart surgeons
- Cardiac anesthesiologists
- Cardiac intensivists
- Transplant nurses
- Cardiopulmonary perfusionists
They are further supported by:
- Infectious disease experts
- Psychiatrists and psychologists
- Blood bank doctors
- Physical, occupational and speech therapists
- Social workers
All of these team members have expertise in pediatric heart transplantation.
What to Expect If Your Child Needs a Heart Transplant
One way that Seattle Children’s supports your child and family through this challenging time is by helping you understand as much as possible about the transplant process.
We accept referrals from your child’s primary care doctor, a specialist, a case manager or directly from you.
For us to decide whether to recommend a heart transplant for your child, we must perform a complete check-up, also called a pre-transplant evaluation.
After your child’s evaluation, the transplant team will decide whether a transplant is the best option for your child. If your family and the transplant team agree that a heart transplant is the right decision, your child will be placed on the national waiting list for a heart, and we will begin working with the organizations that handle the organ donation process.
Your child’s heart transplant evaluation will include:
- Clinic visits with the transplant team
- A review of your child’s medical records and history
- A physical exam
- Blood work and diagnostic tests
You will learn about:
- Benefits and risks of transplant
- Medicines that suppress the immune system
- Health insurance coverage
- Organ donation
- What to expect while waiting for an organ
- What to expect during surgery
- The long-term outlook after heart transplant
The transplant evaluation may be done in clinic, or, in some cases, it is done while your child is staying in the hospital. The entire evaluation process may take weeks to complete, depending on the medical urgency of your child’s case.
Once all of your child’s information and test results are ready, the entire transplant team will meet to discuss your child’s case. This is referred to as the selection committee. Once a decision is made, a member of the team will communicate the recommendation to you by phone or at your child’s next scheduled clinic visit.
Our recommendation could include any of the following:
- Your child is ready to be listed for transplant now.
- Transplant is not an option for your child.
- Your child may be a candidate for transplant in the future; however, your child is not clinically ready for transplant at this time.
If your family and the transplant team agree that a heart transplant is the right decision, your child will be placed on the national waiting list for a heart.
Who will you meet during the evaluation?
During the evaluation you will meet many transplant specialists, such as:
- Transplant cardiologist
- Transplant coordinator
- Cardiac surgeon
- Social worker
- Infectious disease specialist
There may be additional specialists depending on your child’s specific needs.
What tests are needed?
Many tests are needed for the transplant evaluation. These tests help us to:
- Decide how urgently your child needs a transplant.
- Make sure that your child gets a donor organ that is a good match.
- Decide if there are any special precautions that we need to take around the time of transplant.
- Check for any additional risks that need to be considered.
Types of testing include:
- Blood tests
- Cardiac catheterization
- Diagnostic tests such as echocardiogram , electrocardiogram and X-ray
- Dental assessment
Each child is considered on an individual basis. Your transplant team may request other consultations, tests or diagnostic studies to help us understand your child as completely as possible.
Learn more about pediatric heart transplants in this guide for patients and families (PDF).
Hearts for transplant come from people who have died. There is an urgent need for organ donation in the United States, where almost 80,000 people are waiting for lifesaving organ transplants.
Because Seattle Children’s provides specialty care across Washington, Oregon, Alaska, Montana, Idaho and Hawaii, we are able to search for donor organs in a broad geographic area.
Our physicians and surgeons are working to improve the situation for children who need transplants. They are actively involved with national United Network for Organ Sharing (UNOS) committees. UNOS is the governing body over transplantation in the United States. They make sure that all transplant centers follow the rules about organ allocation and transplant to ensure that all patients are treated fairly.
To get involved and help promote organ donation awareness, see our local organ procurement agency, Lifecenter Northwest.
Learn more about organ allocation.
Waiting for a donor organ is a stressful time for your child and family. Here are some steps you can follow to improve the situation:
- Take good care of your child’s health. Make sure your child takes all medicines as prescribed. Tell your child’s transplant nurse coordinator if any other medicines have been prescribed or changed. Tell the coordinator if your child is hospitalized for any reason or if your child develops any new medical problems or infections, even if they can be treated out of the hospital.
- Protect your family from exposure to illness as best as you can. This is a perfect time to pay extra attention to good handwashing.
- Follow diet and exercise guidelines. Your child’s dietitian and physical therapist will help you set up a plan that will help your child maintain strength during the waiting period.
- Update insurance information. Let your child’s team know about any change in insurance coverage.
- Get to know the transplant team and become familiar with the care that your child will need after the transplant.
- Meet others or join a support group. Some families find it helpful to meet other transplant patients and their families. If you would like to do this, your nurse coordinator can help make arrangements.
- Stay in touch with family and friends. Good company will take your minds off waiting and enhance your quality of life.
- Fundraise. Depending on your insurance and your financial situation, this may be a good time to start fundraising. Even with insurance, many out-of-pocket costs are associated with transplant, such as some medicines, insurance co-pays and deductibles. The transplant social worker can help you with ideas of how to start fundraising.
- Relax. Take time to read with your child. Listen to music together. Watch funny movies. An older child can meditate or do light yoga. You can play games with a younger child. Focus on creating enjoyable times with your family.
- Make sure your child’s transplant nurse coordinator can reach you at all times. You will receive a pager from the hospital if you are in an area that can be reached. Do not give out this pager number to friends or family. The person who is able to bring your child to the hospital the quickest should carry the pager. You may also need a cellphone or answering machine. Your transplant nurse coordinator may ask you not to travel far from your local area. Tell the coordinator about any changes to your address or phone number.
- Know how you will get to the hospital. You must be able to get to the hospital as soon as you are told that an organ is available. Make travel plans ahead of time.
- Read about hospital services. Most patient rooms have a pull-out couch for one parent or legal guardian to sleep overnight. When your child is in the Cardiac Intensive Care Unit (CICU) right after surgery, one parent may use a separate sleeping room if one is available. Siblings may not spend the night in the hospital. Learn more about our hospital services.
- Pack your bags. You must be ready to leave as soon as the call comes. Be sure to pack an extra 24-hour supply of your child's medicines. Include clothes for you and your child and games or toys, books, videos and comfort items, such as a favorite blanket or pillow – things that help pass time and soothe your child.
When a heart is available, the transplant coordinator and transplant surgeon will be notified through UNOS.
Both a Seattle Children’s nurse coordinator and a transplant surgeon are on call 24 hours a day. The transplant surgeon and transplant cardiologist will discuss the history and condition of the donor. They will determine if this donor organ would be a good match for your child.
If the organ is a good match, the transplant nurse coordinator will contact you to see if your child is able to undergo the transplant operation. The coordinator must make sure that your child does not have any new health problems that require postponing transplantation.
This is why we must be able to get in touch with you quickly and easily when you are on the waitlist. Please note that it is important for you to answer all calls, even if it is a number that you do not recognize. These calls are often made after hours from outside the hospital.
When we contact you, the coordinator will discuss:
- If your child is well enough for surgery
- How you will get to the hospital
- How long it will take you to arrive
- When to have your child stop eating and drinking to prepare for surgery
- Where to park and check in at the hospital when you arrive
If we are unable to contact you within 1 hour, you will miss a very important opportunity for transplant. The heart will be offered to the next person on the waiting list, and your child will remain on the list.
At the hospital, we will do blood tests and a chest X-ray to make sure your child’s condition is stable enough for surgery. We will start an intravenous (IV) line to give your child medicines and fluids.
The time of your child’s operation is planned to match the heart’s arrival at Seattle Children’s. We try to minimize the time the heart is outside a body. This means the heart must be removed from the donor, transported to Seattle Children’s and then transplanted into your child as quickly as is safely possible.
You may stay with your child until the anesthesiologist has put your child to sleep. Operating room staff will take your child to the operating room.
At that time, you can check in at the Cardiac Intensive Care Unit (CICU) front desk. There, you will be given a pager so that operating room staff can let you know how your child is doing during the surgery.
There are many places for you to wait at the hospital during your child’s surgery, including the hospital cafeteria, the chapel, the Family Resource Center and family waiting rooms in the CICU and near the operating room.
Once your child is asleep under anesthesia, we will put your child on a heart-lung machine (cardiopulmonary bypass). This keeps blood circulating throughout the body while the damaged heart is removed and the new, healthy heart is connected.
For children who have complex congenital heart disease, especially those who have had prior heart surgeries, the operation can be more involved and will take longer.
The operating room staff will let you know how your child is doing during the surgery.
After surgery, your child will go to the CICU. You will be able to be with your child there.
Here are some of the things you may see attached to your child in the CICU:
- Heart monitor. Sticky patches or leads on your child’s chest will be connected to a monitor that checks heart rate and respiration.
- Breathing tube and ventilator. After your child is put to sleep in the operating room, a breathing tube will be placed in your child’s airway to help with breathing. The ventilator pumps air into the breathing tube. We will remove the tube as soon as the doctors feel your child is able to breathe without assistance.
- Several IV lines. Your child will initially have a central line in their neck, with 3 ports. We will use one port to monitor the pressure in your child’s blood vessels, one to give medicines and one to draw blood for lab work. Your child will also have an IV line in an artery in one arm to monitor overall blood pressure.
- A catheter (flexible tube). Your child will have a catheter to drain urine from the bladder. The catheter allows nurses to accurately measure urine output. It will remain in your child’s bladder for up to 3 days. While this catheter is in place, your child may feel the urge to urinate, which is a normal sensation.
- A chest tube. Your child will have tubes placed in the chest cavity to drain out any fluid that may have built up during surgery. These tubes will remain in place for 1 or 2 days, depending on how much drainage your child has.
- A nasal cannula. The nasal cannula is a soft plastic tube that fits under your child’s nose to provide extra oxygen. After we remove the breathing tube, your child will most likely require extra oxygen for a short period of time. Your child will most likely have the cannula on for at least 24 hours.
What to Expect After Heart Transplant
Our goal in performing a heart transplant is for your child to function, grow and develop like other healthy children of the same age. We encourage your child to engage in age-appropriate activities. We will work with you to adapt your child’s medical needs to a child’s normal schedule and activities.
In the first year after your child has a heart transplant, you will have to bring your child to the Heart Transplant Clinic frequently for lab and clinic visits.
A typical schedule might be:
NUMBER OF CLINIC VISITS AFTER SURGERY 1 or 2 times a week Month 1 2 times a month Months 2 through 12 2 to 4 times a year Year 2 2 times a year Year 3 and on
This is a general guideline. The actual schedule and follow-up visits will depend on how your child is doing, how the heart is functioning and whether your child has developed any additional problems after transplant. If your child is having complications, they will need more visits.
Also, please remember:
- We must be able to contact you at any time. We need to have current work and home phone numbers.
- Your child’s transplant nurse coordinator or transplant nurse practitioner will act as your contact for any problems or questions.
For appointments or scheduling, contact the Heart Transplant Center at 206-987-2015.
Organ rejection is a fairly common problem that happens after transplantation.
Because a new heart comes from another person, your child’s immune system will recognize that the heart is foreign and may try to attack it. If your child’s immune system injures the heart, this is called rejection. This is the reason that your child will always be on medicines to help prevent their body from attacking the new heart.
Rejection does not necessarily mean that your child will lose the heart. If detected early, most rejection episodes can be treated successfully.
After transplant, we will teach you to watch for signs that could mean your child is experiencing organ rejection. Your transplant team will also screen for rejection regularly with blood tests, diagnostic studies and exams by your child’s cardiologist.
The possibility for rejection is greatest right after transplant. But at any point your child’s immune system may try to attack the heart. For the new heart to work successfully in your child’s body, it is very important for your child to take medicines exactly as instructed and to go to all clinic appointments.
If you think that your child is having any signs of rejection, call your transplant team right away.
The 3 types of heart transplant rejection
- Hyperacute rejection happens right after the blood supply is connected to the new heart during surgery. This is caused by certain antibodies in the blood that reject the new heart. This type of rejection is rare because we test for these antibodies early in the transplant evaluation. This test is known as panel of reactive antibodies (PRA) testing.
- Acute rejection usually happens within the first year. It is common to see at least 1 rejection episode at some point. This is why we check your child so closely with lab work and other tests. If rejection is diagnosed, we can usually treat it successfully with medicine.
- Chronic rejection happens slowly over time. It can be difficult to reverse. Coronary artery disease is a form of chronic rejection. Our care is focused on maintaining heart function for as long as possible.