What to Expect During Your Visit to the Heart Transplant Program
Many kids with untreatable heart disease find life in the Heart Transplant Program at Cincinnati Children’s. Literally. When your child receives a new heart, they get the opportunity to be an active, participating member of your family and community. They get to grow emotionally and physically with as little limitation as possible from heart disease. In other words, they get to be a kid.
To ensure the best possible outcomes, we follow specific requirements to enroll your child in the Heart Transplant Program. If your child is determined to be a transplant candidate, they will undergo an evaluation by many members of our multi-disciplinary team.
Currently, more people are waiting for heart transplants than there are available donor hearts. When a donor heart becomes available, the best possible match is identified on a national transplant waiting list. The United Network for Organ Sharing (UNOS) selects the best recipient based on the distance between the donor and potential recipient, how sick the child is, how long the child has been waiting, size and weight and blood type.
Your child may wait on the transplant list for months, or it could be less than a day. It is impossible to predict how long anyone will need to stay on a transplant list before receiving a donor organ. It is not uncommon to wait for more than a year.
What to Expect at Your First Appointment
Our heart transplant team will schedule a comprehensive evaluation once your child’s cardiologist (heart doctor) refers them to the Heart Transplant Program. The purpose of this evaluation is to:
- Provide your family information about Cincinnati Children’s and the Heart Transplant Program
- Discuss the implications of a heart transplant and other treatment options
- Assess your child’s health status and determine the need for further tests
- Assess your child and family’s support system and resources for coping with the anticipated stress of a heart transplant
- Establish clearly communicated expectations 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
Making an Appointment at the Heart Transplant Program
Your child’s cardiologist (heart doctor) must refer your child to the Heart Transplant Program.
For more information, please contact the Heart Transplant Program team.
For international patients, learn more about how to become an international patient at Cincinnati Children's.
On the Day of Your Evaluation Visit to the Heart Transplant Program
If you or your child have any concerns or special needs that will make your visit more comfortable, please let us know. The transplant coordinators will work with you and your family on scheduling and will provide you with a detailed itinerary of the day’s appointments. Most evaluations take about two full days to complete.
Arriving at Your Appointment
The Heart Institute is located at Cincinnati Children’s Burnet Campus. We recommend arriving at least 30 minutes before your scheduled appointment to find parking, walk to the clinic and register.
At Your Appointment
Your child and family will meet with the following heart transplant team members as part of the initial transplant evaluation process:
- Cardiologists
- Nurse Practitioners and Coordinators
- Surgeon
- Social Worker
- Pharmacist
- Other doctors or specialists may be included as well
We want you to learn as much as possible about the short- and long-term implications of a heart transplant for your child. So, during the evaluation, the team will take as much time as needed to evaluate your child’s current health and answer your questions. There will also be bloodwork that needs to be completed as well as ultrasounds. Other testing may be done at this time or may be scheduled for a future time.
Once the evaluation is complete, the heart transplant team will meet to share information and decide whether a heart transplant is right for your child. The team will communicate the decision to you and your child’s referring cardiologist. If the team believes a heart transplant is right for your child, and you agree to proceed, a transplant team member will talk with your child and family to review the next steps in the transplant process.
After Acceptance to the Heart Transplant Program
When your child is placed on active status with the United Network for Organ Sharing (UNOS), they may have a donor heart become available at any time. That means your child and family should be ready for hospitalization and surgery on short notice. Your family must always remain within four hours of Cincinnati Children’s Hospital while on the waiting list.
Throughout the transplant process, the following team members are available to support your child and family:
- Child Life specialists
- Financial counselors
- Hospital chaplain
- Neurodevelopmental specialist
- Nutritionist
- Pediatric dentist
- Psychology/psychiatry specialist
The Waiting Process
While your child is on the heart transplant waiting list, you will interact with the heart transplant coordinator between outpatient visits. The coordinator will inform you of any changes in your child’s waiting list status.
Your child will have regular follow-up appointments with heart specialists and general pediatric care providers. Additional treatments may be necessary to support your child’s heart while waiting for a transplant, including anticoagulants, intravenous medications or mechanical circulatory support.
If your child does not require hospitalization while waiting, they will go to the Cincinnati Children’s Cardiomyopathy Clinic for ongoing care. They will need to visit our clinic whether you live near or far from Cincinnati.
If UNOS identifies a donor heart that may be right for your child, they will notify Life Center who will then notify your heart transplant surgeon or cardiologist to decide if the heart is suitable. The surgeon or cardiologist will determine if additional information or tests are needed on the donor heart and make the final decision.
If a donor heart that may be suitable for your child becomes available, the heart transplant coordinator will contact you. If your child is not hospitalized at that time, they will ask you to come to the hospital as soon as possible.
The team will do their best to determine if the donor heart is right for your child as early in the process as possible. However, your child could be admitted to the hospital, have pre-surgery testing, and then be notified that the donor heart is not a good match.
We understand this can be very disappointing. However, our heart transplant team is committed to the best possible outcomes. So, we will not proceed with a heart transplant if it’s not the best match for your child.
The Transplant Surgery
When a suitable donor heart is identified, your child will be admitted to the Cincinnati Children’s Cardiac Intensive Care Unit (CICU) for a possible heart transplant. The care team will take blood, X-rays, EKGs and other tests. Your child may need an IV, and they will not be able to eat or drink until we know the timing of the surgery.
The heart transplant team may order other tests and medications before surgery. Depending on transportation time for the donor heart and other factors, the surgery may start soon after your child gets to the hospital or many hours after admission. We will keep your family informed of the expected timing of the surgery as we know it.
When your child and the donor heart are ready for surgery, we take them to the operating room and place your child on a heart-lung machine (cardiopulmonary bypass). This machine maintains their blood flow and breathing during the surgery. During the procedure, the surgeon will remove your child’s failing heart and suture the new donor heart into place.
After Transplant Surgery
Immediately after the surgery, we will transfer your child from the operating room to the Cardiac Intensive Care Unit (CICU) nearby to recover. While in the CICU, your child begins medication treatment to prevent their body from rejecting the donor heart. They will most likely have a breathing tube in for the first day or two.
After their initial recovery in the CICU, your child will be transferred to the Acute Care Cardiology Unit, or ACCU. It is hard to predict how long your child will need to be in the hospital, but on average they may stay one to two weeks on this unit. A child life therapist will work with your child and family to provide enjoyable activities during the hospital stay.
Preparing to Leave the Hospital
Before you prepare to leave the hospital after your child’s heart transplant, you should fill all medication prescriptions. The transplant coordinators and pharmacist will provide education to you about medications and how to care for your child after transplant. They will let you know when to call the team once discharged. Your care team will give you a list of medications and dosages, a schedule for giving the medicines, and a record to keep track of the medications.
It is very important that your child takes their medications exactly as prescribed. You and a second caregiver will be required to complete 24 hours of care for your child, including giving them their correct medications. The care team will also review the necessary blood work and follow-up visits for your child.
Living with a Heart Transplant
After the transplant, the Cincinnati Children’s transplant cardiologist will work closely with the transplant surgeons and other team members to care for your child.
During the first year, your child will regularly visit our clinic for exams and check-ups. Because your child is at the highest risk during the first three months after a transplant, your family will need to live within forty miles of the hospital and have weekly check-ups with the transplant team. After that, if the care team feels the risk of complications is low, you and your child can move back to your home (as long as it is no more than four hours away). Your child’s care team will discuss when your child can go back to school or daycare with you.
As your child progresses beyond their transplant, they will need fewer visits. After the first year, if you decide to move out of the Cincinnati area or live closer to another transplant facility, the Heart Transplant care team will consider transferring your child’s care to another facility.
