There are many things that aren’t known about pediatric heart transplants. Although some genetic conditions can cause the need for an organ transplant, sometimes random changes also create that need in an unexplained way. The life expectancy of a child who receives a heart transplant has never really been studied, even though the procedure has been performed routinely since the 1980s. Only some local information is available based on what hospitals themselves are tracking.
Facts About Pediatric Heart Transplants
1. More than 400 heart transplants are performed in pediatric patients each year. This is about 12% of the total heart transplants that are performed every year around the world.
2. The average facility that performs pediatric heart transplants averages about 20 procedures per year.
3. Congenital cardiomyopathy, which is one of the primary reasons why a pediatric heart transplant is required, occurs in approximately 1 in 10,000 live births. 10% of congenital heart disease cases have been deemed uncorrectable. Older children generally have cardiomyopathy, but not of a congenital defect.
4. Once a suitable donor heart is available, a patient generally has 2 to 4 hours to get to the hospital and be prepared for surgery.
5. 1 year. That’s the average wait time for a pediatric heart transplant.
6. 30% of the children who are on a wait list for a heart transplant have a mechanical device to aid them while they await a donor organ.
7. The 10 year survival rate for children who receive a pediatric heart transplant: 59%.
8. At Vanderbilt Children’s Hospital, survival rates at 10 years are exceeding 73%. Most programs now report that more than 70% of their recipients survive at least 5 years.
9. 9 out of 10 children who receive a heart transplant will make it through the next month. Between 82-90% of children will make it through the next year.
10. Heart transplantation is not considered a medical cure. Infection and rejection can happen at any time.
11. The risk of lymphoma in pediatric heart transplant patients is approximately 8% at 10 years.
12. The risk of coronary artery disease in children is approximately 15% at five years.
13. Actuarial graft survival for newborn recipients is 59% at 25 years.
14. Cardiac allograft vasculopathy is the most important late cause of death with an actuarial incidence at 25 years of 35%.
15. Chronic kidney disease grade 3 or worse is present in 31% of survivors of a pediatric heart transplant.
16. There were 8,575 pediatric heart transplant procedures reported to the International Society for Heart and Lung Transplantation Registry through 2009.
17. 1 in 4 pediatric heart transplantation procedures is performed on infants.
18. 103 of 322 infant heart transplant procedures performed at Loma Linda University Children’s Hospital, the location of the first successful infant transplant, have occurred within the first month of life.
19. The youngest survivor of a pediatric heart transplant: 1.5 hours old.
20. Of the 15 year survivors of a pediatric heart transplant, 82.5% were alive and showed good heart function at their most recent follow-up appointment.
21. 16%. That’s the percentage of fatalities that are attributed to organ rejection after a pediatric heart transplant.
22. 30% of patients will experience a rejection episode as far out as 20 years after the organ transplant surgery.
23. The early mortality rate is less than 55 for primary transplants in patients in good pre-operative condition.
24. It is not unusual for a heart transplant recipient to be on 10 to 12 medicines at one time.
25. If early mortality is taken out of the pediatric heart transplant statistics, the survival rate is around 20-22 years in length for the average recipient.
26. Up to 4% of the pediatric heart transplant procedures are a retransplantation.
27. Texas Children’s Hospital has averaged 10 VAD placements every year since 2009 to help children who are waiting for a heart transplant.
28. The average adult survival rate after a heart transplant is 10 years.
29. A Stanford University study published in 2006 in The Journal of Heart and Lung Transplantation found that 77% of pediatric patients who underwent heart transplantation between 1974 and 1993 survived past 10 years.
30. In the early 1980s, the 1 year survival rate for pediatric cases was about 80%.
31. In 2011, the average cost of a heart transplant per patient was $997,700.
32. The average amount a physician is paid during a pediatric heart transplant: $67,700.
33. 1 in 5 children who receive a heart transplant have a chronic issue that requires ongoing treatment, such as an active immune system.
What we do know is that with increased technology and updated procedures, the chances of a child surviving are getting better and better. What tracking is available comes from the International Society for Heart and Lung Transplantion and not all of their data is related to only pediatrics. Even so, the statistics do show that long-term survival is very possible.
What is unique about pediatric heart transplants is that there are serious diseases listed as risks of the procedure. Coronary heart disease happens so often that it is considered a common side effect. There is an increased risk of lymphoma and heart attack. The problems can develop rapidly and seriously to the point that a second heart transplant becomes mandatory. Even so, there are generally no activity limits placed on children after a transplant, they can attend school regularly, and some even compete in sports.
What Is the Future of Pediatric Heart Transplantation?
Medical research is exploring a number of exciting fields when it comes to pediatric heart transplantation. From 3D printing to stem cell cultivation, there is a very real possibility that children and infants could one day either have a completely artificial heart or have one that was grown from their own tissues. Either way, this may just reduce the numbers of fatalities that are seen in the 10-15 year mark.
The first recipient of an infant heart transplant is still alive and well, but eventually about 1 in 2 children who receive a new organ will die from complications that happen from the procedure. It’s encouraging because many kids are living longer lives that they wouldn’t have been able to enjoy in the past. We can still do more to improve research in this area to make sure every child has the chance to survive and thrive.
For reasons that are unknown, transplanted hearts have a high risk of developing coronary heart disease. Children who receive a successful transplant will be checked annually for the development of this disease through cardiac catheterization. Support research where you can. Promote awareness of the need for heart transplants in children. In doing so, you’ll have a small, but important part in the future pediatric cardiac care.