Why Parents Need to Know About the Shortage of Pediatric Organ Donors

No parent is ever prepared for the loss of their child. That level of tragedy is something so deeply painful that many of us respond to the very idea with words like, “I can’t even imagine.” But for some families, the act of denial simply isn’t an option. These are families with children who are terminally ill, and having an organ donation could be the very thing that saves their child from death. Except America is facing a shortage of pediatric organ donors and the reasons why are often because of misinformation.

According to the Organ Procurement and Transplantation Network, 115 kids died in 2018 while waiting for an organ. More sobering, though, is that there are currently more than 2,000 children on that list, more than 500 of them are under the age of 6, all waiting for help.

The Washington Post took a hard look at this situation and found that the most common reasons for parents of children who are dead or dying decline to donate organs because of grief, financial cost, the fear of “keeping their child alive to donate would cause their child to suffer more and a fear that their child might not get all the treatments they need because they are seen as a donor for another patient.” In the same article, the Washington Post also highlighted that some parents also fear that their children who are donors would suffer limited or no access to medicine because doctors may view them as donors and lower their priority for treatments.

It turns out that most of these fears are based on bad information about how the donor program works. Parents who agree to have their child’s organs donated would not incur the costs associated with the process. In fact, the cost would be absorbed by the patient receiving the life-saving organ.

It’s also important to understand that doctors, hospitals, and organ donor organizations all operate independently of each other. Doctors treating pediatric patients do everything they can to save that child’s life; they don’t assist in their decline in order to harvest organs.

According to the Donate Life program, anyone can be a donor no matter their age, gender, or even medical history. They point out that it’s the medical condition present during the time of death that plays a role in determining whether or not the organ will be used.

As macabre as it may be to highlight this, being a donor does not mean that a parent cannot plan for an open-casket funeral.

Donate Life also points out that transplants can happen between people of different racial or ethnic groups, but they say that matching donors to patients who share racial or ethnic backgrounds can mean better success rates.

Currently, peoples of African American/Black, Pacific Islander, Hispanic/Latino, American Indian and Native Alaskan, and of multiracial backgrounds represent 58% of the patients waiting on the transplant list.

If you’d like to register your family members to become organ donors, check out the Donor Life program here.