American Academy of Pediatrics Issues Guidance on Pediatric Organ Donation and Transplantation

In 2021, nearly half of children waiting for an organ transplant had waited for more than one year. Some children and teens die each year waiting for a life-saving organ transplant.

ITASCA, IL-- Each year, more than 1,700 children and teens receive organ transplants to extend their lives. Hundreds of others remain on waiting lists for life-saving transplants.

In an updated policy statement, ““Pediatric Organ Donation and Transplantation: Across the Care Continuum,” the American Academy of Pediatrics offers guidance to pediatricians who work with families as they navigate difficult questions and decisions surrounding organ donation and transplantation.

“These are important conversations, and it’s best that pediatricians are prepared and comfortable in providing anticipatory guidance about organ donation,” said Benson Hsu, MD, MBA, FAAP, an author of the statement, written by the Committee on Hospital Care, Section on Critical Care, Section on Surgery, and Committee on Bioethics. “This may come up during a regular office visit with a teenager who is asked about organ donation when registering for a first driver’s license. In other cases, a pediatrician may be helping support a family facing end-of-life care.”

The statement, published in the August 2023 issue of Pediatrics, (published online July 24) addresses organ donation and indications for transplant, the structure of transplant teams, need for both medical and psychosocial support for recipients and their families, and important ethical issues that frequently arise in organ donation and transplantation.

While a clinician may be hesitant to introduce the topic, few families of either adults or children or adolescents appear to suffer psychological harm by having the option of donation presented to them, according to research cited in the statement.

The AAP recommends:

• Pediatric health care professionals need to be aware of basic and current knowledge of donation and transplantation medicine, ethics, and policies.
• Teens and older children should be engaged in discussions about organ donation and transplantation, to the extent that their medical condition allows.
• Children and teens with intellectual and developmental disabilities are not categorically excluded from organ donation or as transplant recipients.
• Organ donors and organ transplant recipients and their families will require support from a multidisciplinary care team that includes a variety of primary and specialist care providers and surgeons, critical care team, child life specialists, spiritual support providers, and others.
• Discussions should respect the child’s or adolescent’s emerging autonomy while acknowledging the important role of parents.

In 2021, nearly half of children waiting for an organ transplant had waited for more than one year. Some children and teens die waiting for a life-saving organ transplant, and children younger than age 1 have the highest death rate waiting for an organ transplant. Disparities exist by race and ethnicity, as well.

“Pediatricians can help shape public policies related to the process of organ donation and access to organ transplantation,” Dr. Hsu said. “We hope to increase awareness through education and anticipatory guidance.” 

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The American Academy of Pediatrics is an organization of 67,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults. For more information, visit www.aap.org and follow us on Twitter @AmerAcadPeds