What diagnoses lead to heart transplantation?
Children with certain types of cardiomyopathy and end-stage or inoperable congenital heart disease may require pediatric heart transplantation. The challenge of organ transplantation is to maximize survival and improve the child's quality of life. It is important for families and patients to understand that having a heart transplant is not a cure; it is trading one illness for another.
Who is a candidate for heart transplantation?
Patients from newborns to 18 years who have end-stage heart disease due to cardiomyopathy or congenital heart disease that is not amenable to conventional surgery are candidates for heart transplants.
What are the types of heart transplants?
The two types of heart transplants are orthotopic cardiac and heterotopic cardiac transplants. With orthotopic transplants, the most common type, the patient's damaged heart is removed and a healthy donor heart is sewn in its place. In a heterotopic heart transplant, the original heart is left in place, and the healthy donor heart is sewn in next to it. Texas Children's Heart Transplant Team performs both types of transplants.
How long will my child have to wait for a donor heart to become available?
Waiting is one of the most difficult aspects of transplants. Texas Children's heart transplant team can't give you an exact date; it may take days, weeks, months or even years before a donor heart that matches your child's needs becomes available.
What status will my child be on the list?
After a patient is evaluated and found to be a suitable transplant candidate, the appropriate forms are completed to allow the patient to be placed on the national United Network of Organ Sharing (UNOS) cardiac transplant waiting list. A patient can be listed as 1 of 4 different statuses.
- Status 1A is reserved for the sickest patients who require transplants immediately. These patients typically are in the intensive-care unit, possibly on an assist device or on multiple IV drugs for support, less than 6 months old or have life-threatening arrhythmias.
- Status 1B may be a child who is on a single IV inotropic drug, has growth failure (height and/or weight less than or equal to 5 percent on the growth chart), is on outpatient 2 inotropic therapy, or is a fetus in-utero with known cardiac disease that will require transplantation at the time of birth.
- Status 2 includes all other patients who need cardiac transplantation.
- Status 7 are patients who are temporarily inactive on the transplant waiting list for one reason or another such as infections, financial problems or unstable conditions. These patients do not accrue time at this status, but they do not lose the time they have accrued.
Changes in a patient's UNOS status are made by the transplant service based on his or her clinical condition. If the patient’s medical condition changes, the UNOS status is reassessed and updated.
Hearts are allocated to children based on blood type and body size and then to the child in the highest priority status. During the waiting period, families must carry pagers so they can be immediately located at all times.
Hearts are allocated to children based on blood type and body size and then to the child in the highest priority status. During the waiting period, families must carry pagers so they can be immediately located at all times.
What mechanical devices are available to my child while he or she waits for a donor heart to become available?
At Texas Children's Heart Center, ventricular assist devices (VAD) are available to support patients whose hearts requires help to generate an adequate cardiac output.
When a transplant is not immediately available, we offer a variety of
circulatory support devices as a bridge to transplantation. We are
currently the only independent pediatric program to offer the following 7
devices, as well as extracorporeal membrane oxygenation (ECMO), to a
child of any age or size:
- Rotaflow
- TandemHeart
- Thoratec P-VAD
- HeartMate II
- HeartWare
- Berlin Heart EXCOR Pediatric
- Syncardia total artificial heart
Since we implanted our first pediatric ventricular device in 1985, we
have become one of the busiest VAD programs in the world. In the past 5
years, we have placed nearly 50 VADs in patients with acquired and
congenital heart disease.
Why does my child need all those medications?
The medications prescribed to your child are as important as the new heart, and parents must be willing to strictly administer medications on time. The medications each child requires are individual, and over time certain medicines may not be necessary. You and your child must understand that not taking medications is not an option and could result in serious medical complications.
Will my child's new heart last for his or her lifetime?
The life expectancy of each transplanted heart varies, but most children require re-transplantation at some point in their adult lives due to coronary artery disease. For reasons not currently understood by the medical community, a transplated heart develops coronary artery disease. Your child will have to have his or her cornonary arteries examined in the cardiac catheterization lab on a yearly basis.
Will my child be able to live a normal life?
With the exception of routine visits with the heart transplant team, most children who have heart transplantations go on to live normal lives after the initial post-surgery period.
