What to Consider if Your Child Needs an Organ Transplant

Learning that your child needs an organ transplant is incredibly scary for any parent. As their primary advocate, you want to ensure they get transplanted quickly and have a successful long-term outcome.

Unfortunately, in the United States, the number of people in need of transplant exceeds the number of available deceased donors. Every year, children die awaiting transplant because no organ is available.

Through multi-listing, parents have the opportunity to have their child listed not only at their local hospital, but at other hospitals across the country.

While selecting a pediatric transplant program, parents should consider these three factors:

What is the hospital’s average waitlist time?
Does the hospital have an experienced living donor program?
What are the hospital’s post-transplant patient outcomes?

Short waitlist times

The more time a child spends on the waitlist, the sicker they become. Long waitlist times are associated with morbidity, mortality, and developmental delays, therefore, it’s essential to find a hospital with short waitlist times.

“Our average waitlist time at Children’s Colorado for pediatric liver transplant is less than two months, compared to the national average of eight months,” said Amy Feldman, M.D., Ph.D., medical director of Children’s Hospital Colorado’s liver transplant program.

Click here to learn more about Children’s Hospital Colorado

Living donation

For children in need of a new liver or kidney, deceased donors aren’t the only option. A living person can donate one of their kidneys or a piece of their liver to a person in need, called living donation. Living donation increases the number of available organs, especially small organs for pediatric patients, and results in better post-transplant outcomes.

Even if a child doesn’t have a directed donor — a donor voluntarily directing the organ to a specific person — they can receive an organ from a person who donates to an unknown recipient, known as a non-directed living donor.

“It’s a huge opportunity to increase the donor pool,” said Margret Bock, M.D., M.S., Children’s Colorado’s medical director of kidney transplant, emphasizing the importance of having a living donor program.

“We start looking for a living donor right away when a child is evaluated for transplant,” Feldman added. “Living donation allows a child to get transplanted before they develop severe liver failure.”

Success through multidisciplinary care

The ultimate goal of transplant is for a child to live a long, healthy life. Delivering excellent patient and organ survival rates for children with complex disease is essential to the success of a transplant program. Multidisciplinary care, which brings together a team of doctors from various disciplines to collaborate on comprehensive and coordinated patient treatment, is critical to this mission.

“We have exceptional multidisciplinary transplant teams who work well together,” said Michael Wachs, M.D., Children’s Colorado’s surgical director of abdominal transplant. “This team mentality has allowed us to try new approaches faster than more siloed programs, create better experiences for patients and families, and save more lives.”

Take, for instance, the case of a toddler with a rare metabolic disorder that had resulted in severe, end-stage heart failure.

“Given the child’s diagnosis, other centers were hesitant to consider the patient a candidate for transplantation,” said Matthew Stone, M.D., Ph.D., Children’s Colorado’s surgical director of heart transplant. “Following multidisciplinary evaluation and planning, we accepted the patient for transplant, and she is now three years post-transplant, and an active and healthy child.”

“Children’s Colorado is a national leader within the field of transplant because of its willingness to accept complex patients who have been turned down by other centers,” said Melanie Everitt, M.D., Children’s Colorado’s medical director of the heart transplant program.

At Children’s Colorado, transplant outcomes are impressive. Between Jan. 1, 2021, and June 30, 2023, the one-year survival rates were 100%, 94%, and, 95% for kidney, liver, and heart transplant, respectively; which is at or above expected outcomes.

Part of a successful transplant also includes being able to get a child back home as quickly as possible.

“Children and families thrive when we can get them back to their local communities,” Everitt emphasized. “We do this by partnering with their local team to provide excellent care close to home. This allows quicker return for parents to work, patients and siblings to school, and reunification of the family and community.”

To learn more, visit childrenscolorado.org