Editor’s Note: Beth Dworetzky's son was born with a complex heart condition. She and her son navigated a fragmented health care system for 31 years until his death in October 2021. -Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics
Family Connections with Pediatrics blog
In 2012, while we were waiting for our son to come out of surgery, his primary cardiologist told my husband and me that it was time to bring in the heart transplant team. We always knew this was a possibility, but we had no idea how to talk to our son about it. The cardiologist did not want to do it either. So, we set up a phone call with the transplant doctor. She thought a “pop in” to meet our son as part of his follow-up visit with the primary cardiologist would be a good way to let our son know.
I always dropped my son off at the hospital entrance so he could check himself in at the clinic while I parked. When I got to the clinic, he was still at the check-in desk. His face was drained of color and I thought he was going to pass out as he said, “no one ever told me I needed a heart transplant.”
The woman at the desk had announced that he was there for “transplant,” rather than using the names of the doctors he would see.
I share this snapshot of a single interaction in my son’s care to show how and why coordinated, team-based communication and care are so important especially when it comes to organ donation and transplantation. It is really hard for children and families to deal with the medical issues surrounding the need for replacement organs. Additionally, there are emotional issues that arise from knowing that someone has to die in order for the transplant to happen. The haphazard way my son learned that he might need a new heart dismissed all of these emotional issues and added to his anxiety.
As of July 2023, more than 2,100 children younger than 17 are on organ transplants lists in the US. The giving and receiving of organ donations affect so many. Families hope that their children will get the needed organ, even as they know that someone else’s child must die to make the donation possible. Every day, names are added to wait lists and others die while waiting. One organ donor may save up to 8 lives, but there are still not enough donors.
In this issue of Pediatrics, the American Academy of Pediatrics has an updated policy statement, "Pediatric Organ Donation and Transplantation: Across the Care Continuum" (10.1542/peds.2023-062923) to raise awareness of the need for pediatric donors and improve care across the lifespan for children who receive organ transplants.
What’s in the policy statement?
The policy includes:
- How a person is declared dead.
- How to talk with and support a family about consenting (agreeing) to donate the organs from a loved one who has died.
- The importance of follow-up care for babies, children, and teens who receive organ transplants.
- The importance of supporting the mental and emotional health needs of families and their children who need and receive a transplant.
- The importance of team-based care that includes pediatric specialty providers, the transplant team, pediatricians and other primary care providers, and the family.
How can families use this information?
- If your family supports organ donation, be a model for your children. Sign up to be a donor. Talk to your children and teens about organ donation. Many states’ Departments of Motor Vehicles ask people if they want to be an organ donor when they first get, or renew, their driver’s license. People may also sign up to be an organ donor at Donate Life America.
- The Affordable Care Act does not let most insurers set a dollar amount on yearly and lifetime care. But this is only for the essential health benefits that health plans must cover. Organ transplantation is not an essential benefit. Health insurers can limit the amount they pay for organ transplants. After the limit is reached, families must pay out-of-pocket for continued care related to the transplant. Check with your health insurer about any dollar limits for organ transplants. Note: Donor families do not pay any costs associated with organ donation.
- Get information about organ donation and transplantation from trusted sources. If you read about it on social media, talk with your health providers to make sure it is true.
- Learn about programs that work to increase awareness of organ donation. As example, the Gift of Life Donor Program has resources you can share with your children’s schools.
- Share this policy statement with your children’s health providers.
- If you work in an advisory or partner role with a health system, share this policy statement. Use it to talk about ways to make the information and guidance in the policy statement a reality. For example, work with primary care providers and schools to include organ donation information as part of the information teens get when they are learning to drive.