Heart Transplant Information
The Heart Transplant Program provides children with untreatable heart disease a chance to meet two basic needs:
- To be an active, participating member of a family and community; and
- To grow and develop, both emotionally and physically, with as little limitation as possible from heart disease.
The members of the heart transplant team are committed to providing care to your child and family at every point in the transplant process. Our services and team members strive to support, respect, encourage, and build comfort and strengthen your family. Priority is given to promoting your child and family's patterns of living at home and in the community.
Communication is important between the transplant team and you and your child to ensure the best quality care. You and your child will work together with the members of the heart transplant team before, during, and after transplant to:
- Identify the expectations of transplantation;
- Identify the barriers of transplantation; and
- Identify the resources to overcome the barriers of transplantation.
Detailed Heart Transplant Information
Read detailed information about transplant candidates, the heart transplant list, what to expect during your hospital stay, and living with a heart transplant.
Transplant Candidate
Eligibility Overview: Who is a candidate for heart transplant?
Eligibility for a heart transplant
Your child is only eligible for a heart transplant if s/he has a heart problem that cannot be treated and his/her survival expectancy is less than a year. Consideration for transplantation requires that your child has no significant abnormalities of his/her other organs.
The timing of the decision about a heart transplant is different for every person.
Heart transplant donors
Currently there are more people waiting for heart transplantation than there are available donor hearts. A person can only donate a heart when his/her brain is injured in death, but the heart and other organs are not injured.
Match between donor and recipient
When a donor heart becomes available, the child waiting on the transplant list who is the best possible match is identified on a national computer list. There are several considered in selecting the best recipient including blood type, size/weight, distance (miles) between the donor and potential recipient, how ill the child is, and how long the child has been waiting on the transplant list. The donor and recipient must have compatible blood types, and match according to size and weight. However these factors alone do not determine the best match.
Your child may wait on a transplant list for months, or it could be less than a day. It is impossible to predict how long any person will need to wait on a transplant list before receiving a donor. It is not uncommon to wait for more than a year.
Evaluation Visit
What happens at the evaluation visit for heart transplant?
When your child is referred to Cincinnati Children’s for consideration for a heart transplant, a comprehensive evaluation is scheduled by the heart transplant team. The purpose of this evaluation is to:
- Provide information to your child and family about Cincinnati Children’s and the Heart Transplant Program;
- Discuss implications of heart transplant and treatment options with your child and family;
- Assess your child's health status and determine the need for further tests or information, if any;
- Assess your child and family's support system and resources for coping with the anticipated stress of a heart transplant; and
- Establish communication and a relationship between your child, family and the Heart Transplant team, all of whom will be actively involved in your child's care and treatment once accepted for transplant.
Your child and family will meet with the following people as part of the transplant evaluation process:
- Transplant Cardiologists
- Transplant Nurse Practitioners/Coordinators
- Transplant Surgeons
- Transplant Social Workers
- Transplant Pharmacists
The following people are available as needed to your child and family throughout the transplant process:
- Financial counselors
- Hospital chaplain
- Public relations
- Pediatric dentist
- Child Life specialists
- Psychology/psychiatry specialist
- Neurodevelopmental specialist
- Nutritionist
During the evaluation process, you are encouraged to ask questions and learn as much as possible about the short- and long-term implications of heart transplantation. You are given as much time as possible, as determined by your child's current health and need for treatment, to make a decision about pursuing heart transplantation.
Upon completion of the evaluation, the heart transplant team will meet to share information and make a decision about the suitability of a heart transplant for your child. This decision will be communicated to the referring cardiologist and to you. If the team feels that transplantation is suitable and you agree to proceed with a transplant, a member of the transplant team will talk with your child and family to review the next steps in the transplant process.
Not every child who may need a transplant is acceptable for transplantation. Reasons that some children are not listed for transplantation include:
- Child / family desire
- Medical contraindications
- Other contraindications
The goal of heart transplantation is to return your child to a functional state with the least amount of limitations and to improve quality of life.
Transplant List
Once a candidate, what is the transplant listing and waiting process?
Getting on the List
Once accepted by the Heart Transplant Program, additional appointments and/or laboratory tests will be scheduled if needed. When all information is complete, your child's transplant evaluation summary will be presented to the following:
- The Ohio Solid Organ Transplantation Consortium
- United National Organ Sharing (UNOS)
- Ohio Valley Life Center, for your child's entry into the national computer list
Once placed on active status with UNOS, a donor heart could become available at any time for your child. Your child and family should continue to prepare for the hospitalization and surgery experience.
The Waiting Process
Your child may wait on a transplant list for months, or it could be less than a day. It is impossible to predict how long any person will need to wait on a transplant list before receiving a donor. It is not uncommon to wait for more than a year.
While on the heart transplant list, you will have contact with the heart transplant coordinator between outpatient visits. A schedule will be established for your child’s cardiology follow-up and general pediatric care.
Additional treatments may be necessary to support your child’s heart while awaiting transplantation including anticoagulants, intravenous medications or mechanical circulatory support.
If your child does not require hospitalization, he/she will be seen at the Cardiomyopathy Clinic here at Cincinnati Children’s on a frequency that is determined by his/her illness. This applies to you whether you live near or far from Cincinnati.
The transplant coordinator will keep you informed of any changes in your child's waiting list status, changes in the follow-up schedule, and changes in the team or center.
If the Ohio Valley Life Center Procurement Coordinator or UNOS identifies a donor heart may be available for your child, the Cincinnati Children’s heart transplant surgeon or transplant cardiologist will be notified. The transplant surgeon and/or cardiologist will decide if additional information or tests are needed on the donor heart, and will decide if the heart is suitable for your child.
If a donor heart becomes available, the heart transplant coordinator will contact you. At that time, you may be instructed to either:
- Wait for another call, and remain at home; or
- Wait for another call, and prepare to come to the hospital; or
- Come to the hospital as soon as possible.
Every effort is made to determine suitability of the donor heart as early in the process as possible. However, it is possible that your child could be admitted to the hospital, have pre-surgery testing, and then be notified that the donor heart is not suitable. We understand this can be very disappointing but our heart transplant team is committed to very high standards for the use of donor organs and will not proceed with a transplant if the organ or match is less than adequate for your child. Once a donor organ is accepted, a surgical team travels to the donor hospital to retrieve the heart.
Hospital Stay
What happens once my child comes to the hospital?
When admitted to the hospital for a possible heart transplant, your child is admitted to the Cardiac Intensive Care Unit (CICU). Blood tests may be needed, along with an X-ray, an EKG, and other possible tests. Your child may need to have an IV started, and will not be able to have anything to eat or drink at least until the timing of the transplant is known.
The heart transplant team will decide what tests are needed and what medications must be taken before surgery. Depending on transportation time for the donor organ and other factors, the surgery may start soon after admission to the hospital or it may start many hours after admission. We will keep you informed as closely as possible of the expected timing of the surgery.
When your child and the donor heart are ready for surgery, he/she is taken to the Operating Room and placed on a heart-lung machine (cardiopulmonary bypass). Your child’s failing heart is removed and the new donor heart is sutured into place.
The program is obligated to treat the patient’s health information and that of the donor as confidential, in accordance with the requirements of the Health Insurance Portability and Accountability Act of 1996 “HIPPA” (45 CFR parts 160 and 164). This shall be the responsibility of a transplant coordinator and a transplant physician(s)/surgeon(s)/clinician.
After Surgery
What should be expected after transplant surgery?
Immediately After the Heart Transplant
Your child will be transferred from the operating room to the Cardiac Intensive Care Unit (CICU) to receive further care. While in the CICU, s/he will be recovering from the surgery and will begin treatment with many medications to prevent rejection of the donor heart. Your child will most likely remain in bed while in the CICU. S/he will be able to drink and eat by mouth in the first few days after the transplant.
Transfer from the CICU
When your child is transferred from the CICU, s/he or he will be assigned a private room on one of our nursing units. You and your family need to be very careful to wash your hands upon entering your child's room and to avoid contact with s/he if anyone is ill.
Your child will spend five to ten days in this room before going home, though some children do require longer hospital stays. A child life therapist will work with your child and family to provide enjoyable activities while s/he is confined to the room. During this time, you will be learning about the medications and precautions you need to know before leaving the hospital. This is the time to ask questions, and to become familiar with the routines necessary for discharge from the hospital after a heart transplant.
Preparing for Discharge from the Hospital
Prescriptions for medications will be filled by the Cincinnati Children’s pharmacy or an outside pharmacy a day or two before discharge to allow your child and family time to practice measuring doses, etc. before leaving the hospital. Several days before discharge, you will be given the amount of medications, a schedule for giving the medications and a record to keep track of the medications as practice for use after leaving the hospital. We will review complete information about follow-up visits and "what to watch for" with you before discharge.
Living with a Heart Transplant
Ongoing Care
What is involved in ongoing care?
Your child will be followed by the Cincinnati Children’s transplant cardiologist, in consultation with the Cincinnati Children’s transplant surgeons and other heart transplant team members continually or until transferred to an appropriate transplant facility.
First year after transplant
Your child will receive ongoing follow-up care by the transplant cardiologist at Cincinnati Children’s after hospital discharge. Your child will continue to come here for procedures including cardiac catheterization and biopsies as determined by the transplant team. Because this is the time of highest risk for complications, you will need to reside very close to the hospital for up to three months after transplant. Your child is then discharged back to your home once it is felt that the risk is low. During the first year, your child will be seen very frequently for scheduled clinic visits and for cardiac catheterizations. The first six months are the most intense regarding scheduled visits and become less so during the second six months.
Second year and longer after transplant:
Follow-up visits will occur on a scheduled basis according to how well your child is progressing after transplant. You may return to Cincinnati Children’s every six weeks for either a clinic visit or a cardiac catheterization. As your child progresses further beyond the transplant operation, the frequency of visits becomes less.
If you move out of the referral area or live closer to another transplant facility, transfer to that transplant center will be considered.
Risks and Complications
What are the risks and complications?
The immediate risks of transplantation include the usual risks of open-heart surgery and may be increased based on your child's pre-operative condition.
Success and the Future
What do success and the future look like?
The Heart Transplant Team at Cincinnati Children’s has performed more the 90 heart transplants in the program’s history, including children one-month-old to 30-years-old, and has >90 percent one- and three-year survival rate.
Survival rates have continued to improve with experience, better techniques and medications, and improved rejection surveillance and immunosuppression.
