2,000 children under the age of 18 are on the national transplant waiting list.
Pediatric transplants differ slightly from other organ donations — as organ size is critical to a successful transplant, children often respond better to child-sized organs. There are currently 2,000 children under the age of 18 waiting for a variety of organs, and nearly 25% of them are under 5 years old. Read on for more information about pediatric donation.
How many children require organ transplants?
In 2017, more than 1,800 children received life-saving transplants, matched from nearly 900 pediatric organ donors. Currently, there are 2,000 children on the national transplant waiting list. More than 500 children waiting for a donor organ are between 1 and 5 years old.
While the donors ranged in age from newborns to 17, most were between 11 and 17 years old — though in 2017, more than 120 pediatric organ donors were babies under the age of 12 months.
Every year, thousands of pediatric cornea and tissue donors help restore sight and save and heal lives.
What causes the need for pediatric transplantation?
Many of the conditions that prompt the need for transplant can occur as early as infancy — including heart issues like restrictive cardiomyopathy or liver diseases like biliary atresia. Other issues surrounding injuries or diseases may also occur during childhood.
A number of diagnoses and conditions may necessitate a pediatric transplant. Some conditions can be diagnosed by a pediatrician.
Kidney conditions, as determined by a pediatric nephrologist, can include acute kidney failure and chronic kidney disease.
Liver conditions, determined often by pediatric hepatologists, can include metabolic diseases such as Wilson’s disease and Types 1–4 of Glycogen storage disease, acute and and chronic hepatitis, intrahepatic cholestasis, obstructive biliary tract liver disease, traumatic and post-surgical biliary tract diseases, cirrhosis, Caroli disease, congenital hepatic fibrosis, cystic fibrosis, and Budd-Chiari. Biliary atresia is the most common liver disease to require a liver transplant in children.
Heart conditions, diagnosed by pediatric cardiologists, can include congenital heart disease and cardiomyopathy.
Lung conditions, diagnosed by pediatric pulmonologists, may include cystic fibrosis and pulmonary hypertension.
Children suffering from advanced intestinal disease often benefit from intestinal transplants or short bowel transplants to avoid or treat liver problems or to assist with total parenteral nutrition (TPN) when a child’s veins are too damaged for IVs.
More information on specific conditions for pediatric transplants can be found via UPMC Hillman Center for Pediatric Transplantation and the Mayo Clinic, which also list the types of conditions that require pediatric organ donations, the specialists involved in these processes.
How does the pediatric transplant waiting list work?
Organ size is critical to a successful transplant as children often respond better to child-sized organs. Although pediatric candidates have their own unique scoring system, children are essentially first in line for pediatric donor organs.
As with the national transplant waiting list, the size of the recipient’s body is taken into account along with the size of the donor organ in order to make the best possible match of donor to recipient. Very small children most often receive donations from other young people — although older children and adults can also be a good match.
It’s also possible for children to receive deceased or living donations of partial organs, such as a partial liver transplant.
- Most children under the age of 1 are waiting for a liver or heart transplant
- Most children ages 1–5 are waiting for a kidney, heart, or liver transplant
- Most children ages 5–10 are waiting for a kidney transplant
- Most children ages 11–17 are primarily waiting for a donor kidney transplant; followed by donor liver or donor heart
Children are also on the pediatric transplant waiting list for donor lung, intestine and pancreas.
Can my child register to be an organ donor?
Teenagers 15–17 years old may register their intent to be an organ, eye and tissue donor (you can do this while registering for your driver’s license at the DMV or on DonateLife.net!). However, until they are 18 years old, a parent or legal guardian makes the final donation decision. A parent or legal guardian must authorize an organ, eye or tissue donation for anyone under the age of 18.
National Pediatric Transplant Week
Celebrated the last week of April, as part of National Donate Life Month, National Pediatric Transplant Week offers donation and transplantation organizations the platform to talk about the powerful message of ending the pediatric waiting list, to engage clinical partners to share their innovative work and patient stories (candidates and recipients), and to honor donor families whose children have saved and healed lives through organ, eye, and tissue donation.
National Pediatric Transplant Week gives pediatric donor and recipient families an opportunity to share their stories, encourage others to help save and heal lives by registering to be organ, eye and tissue donors and to learn more about becoming a living donor.
Donate Life America (DLA) would like to thank the United Network for Organ Sharing (UNOS), the American Society of Transplantation (AST) and the American Society of Transplant Surgeons (ASTS) for their collaboration and support in piloting the first annual National Pediatric Transplant Week.
Children’s books about donation & transplantation
Thank you to the authors who are using their artistic gifts to bring attention to donation and transplantation. These authors support Donate Life America through the sale of their books:
More than 160 million people are registered organ, eye and tissue donors. Join us by registering your decision to save and heal lives at RegisterMe.org.