What to expect from the Norton Children’s Pediatric Heart Failure, Cardiomyopathy and Heart Transplant Program
The Pediatric Advanced Heart Failure and Transplant Program at Norton Children’s Heart Institute provides lifesaving, state-of-the art heart care. Since Norton Children’s Hospital’s groundbreaking infant heart transplant in 1986, we’ve performed 78 heart transplants. This year alone, Norton Children’s Heart Institute, affiliated with the University of Louisville, performed 10 heart transplants. Here’s what you can expect from our transplant team.
Each child is thoroughly evaluated by Norton Children’s Heart Institute cardiologists, surgeons and staff. This evaluation period is critical in determining what a patient needs, from oral medications at home, to a ventricular assist device (VAD) or even a heart transplant. Generally, the evaluation consists of the following tests:
- Blood tests, including tissue typing
- Cardiac catheterization: A catheter (a thin, plastic tube) is inserted into the heart through an artery or vein in the neck or groin to measure heart pressures and take pictures to further evaluate the heart.
- Cardiology evaluation
- Cardiovascular surgical evaluation
- Chest X-ray: A picture of the child’s heart and lungs
- Dental exam
- Echocardiogram (echo): An ultrasound that shows difference areas inside the heart
- Electrocardiogram (EKG): A test that measures heartbeat and heart rhythm based on the electrical activity of the heart
- Nutritional evaluation
- Infectious disease and immune system evaluation
- Pharmacological consultation
- Physical and occupational therapy evaluation
- Psychological evaluation
- Social work evaluation
- Tuberculosis testing
- Urine and stool studies
These tests help the Norton Children’s transplant team:
- Assess your child’s health status and determine the need for further tests or information
- Assess your child’s and family’s support system and coping resources your child and family may have during the stresses of a heart transplant
- Build a relationship with your child, family and the heart transplant team; the entire team will be actively involved in your child’s care once he or she is accepted for transplant
- Discuss treatment options and the effects of a heart transplant with your child and family
- Give information to your child and family about our heart transplant program
Medical review for transplant
Once the evaluation and tests are complete, all potential transplant candidates are presented to the Transplant Review Board. This board consists of multiple physicians, nurses and other specialists with a great deal of experience related to identifying patients for which a heart transplant is a good option. You will be notified of their decision after the meeting by a member of the transplant team and by letter from the review board.
Not every child who may need a transplant is suitable for a transplant. Reasons some children are not put on the heart transplant list include:
- Child/family desire
- Medical conditions or risk factors other than heart failure
- Other conditions or issues that may cause harm if a transplant is done
How long does it take to get a donor heart?
The waiting period can take days, weeks, months or years. Generally, the child can wait five months or longer for a heart. If you are from outside the Louisville Metro and Southern Indiana area, you will be asked to live within one hour of the hospital after being placed on the waiting list. The transplant coordinator must be able to contact you 24 hours a day.
Determining your child’s spot on the waiting list
After a child becomes a transplant candidate, his or her medical information is sent to UNOS (United Network for Organ Sharing) for placement on the national heart transplant waiting list. A patient can be listed as one of four statuses:
- Status 1A – highest urgency. A child must be admitted to the listing hospital and meet one of the following criteria:
- Relies on a ventricular assist device (VAD)
- Is placed on ECMO
- Is on a mechanical ventilator
- Has a significant congenital heart disease diagnosis and requires infusion of multiple intravenous inotropes or a high-dose single intravenous inotrope
- May or may not be admitted to the listing hospital and:
- Requires assistance of a ventricular assist device (VAD)
- By exception, is admitted to the listing hospital and the physician believes, using acceptable criteria, that the child has an urgency and potential benefit comparable with that of other 1A status candidates
- Status 1B is the second-highest urgency. A child must meet at least one of the following criteria:
- Needs infusion of one or more inotropic agents but does not qualify for status 1A
- Less than 1 year old at the time of initial registration and has a diagnosis of hypertrophic or restrictive cardiomyopathy
- By exception, the candidate is admitted to the listing hospital and the physician believes, using acceptable criteria, the child has an urgency and potential benefit comparable with that of other 1B status candidates
- Status 2 includes all other candidates for heart transplantation
- Status 7 is for patients who are temporarily inactive for different reasons. These patients do not add more time to their wait but do not lose the time they have already accrued.
Changes in a patient’s UNOS status are made by the transplant service based on the patient’s clinical condition. If your child’s medical condition changes, the UNOS status is reviewed and updated. Hearts are allocated to children based on:
- Body size
- Blood type
- Child with the longest wait time and highest priority status
Planning your stay
In order to be placed on a heart transplant wait list, patients must stay within one hour of the hospital at all times and must be available with their parents around the clock.
Many families outside of Louisville Metro and Southern Indiana area may have to make tough decisions about whether the entire family or only certain members relocate close to Norton Children’s Hospital. Your transplant social worker can help you research available housing options near the hospital and may help you manage relocation costs.
After your child’s transplant, their care will take place in Louisville. You will have to stay in the Greater Louisville area for six months following the transplant or until your child is cleared by the transplant care team.
The heart transplant process can be hard for families. Norton Children’s has many resources available to help you and your child through this process. You will have continued contact with a dedicated heart transplant social worker, child life therapy and the traditional members of your child’s transplant team. It’s important to reach out to family and loved ones, too. Your entire family will need the emotional support from loved ones during this time.
Why Norton Children’s Heart Institute for cardiomyopathy, heart failure and heart transplant care?
- Norton Children’s Hospital has been a pioneer in pediatric heart transplant surgery. The hospital was the second site for a successful infant heart transplant in the country and the first in Kentucky, performed in 1986.
- Our program has the oldest living pediatric transplant patients, three individuals who received transplants in 1987.
- Our team includes specialists in cardiomyopathy and neuromuscular disease, among others. Our muscular dystrophy clinics provide a multidisciplinary approach with advanced imaging and more for children with cardiomyopathies.
- Our program has a 100 percent survival rate using ventricular assist devices (VADs) as a bridge to heart transplantation (as of 2018).
- Our heart transplant team includes an infectious disease physician, transplant psychologist, the Hearts & Hands Care Team, and other caregivers to address the physical, intellectual, emotional, social and spiritual needs of patients and their families before and after surgery.
- We offer support systems for children and families waiting for heart transplants, including the Brave Hearts program.
- We have the only pediatric heart genetics program in Kentucky.
- We are approved by the Centers for Medicare & Medicaid Services, and work closely with health insurers to help families.
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