The Shortest Liver Transplant Waitlist Times in the Country

Currently, there are between 300 and 400 children in need of a liver transplant. Unfortunately, there are not enough deceased grafts for every child in need, and every year, children die on the waitlist because no graft is available. The majority of children in the United States wait longer than six months for their new organ, and long waitlist times result in morbidity, mortality and cognitive and growth delays.

The living donor liver transplant program, a collaboration between the University of Colorado and the Pediatric Transplant Program at Children’s Hospital Colorado, has allowed Children’s Colorado to achieve the shortest waitlist times in the country.  The average waitlist time at Children’s Colorado is 48 days, compared to the national average of 182 days.

Helping liver transplant patients thrive

The team in Colorado is committed to finding each child a graft as quickly as possible by utilizing every available option for transplant. This includes being willing to perform whole and reduced size deceased donor liver transplant and directed living donor transplant (where a living person donates a portion of their liver to a specific person), and non-directed donation (where a living person donates to a stranger).

“Often we are able to find a directed or non-directed living donor for the child and get them transplanted in a matter of weeks,” says pediatric transplant hepatologist and Medical Director of the Liver Transplant Center, Amy Feldman, MD, PhD.

The complex nature of living donor liver transplant results in only a handful of centers who are truly experienced in performing the technicalities of this life-saving surgery. 

“Children’s Colorado was one of only six U.S. pediatric centers to perform five or more living donor liver transplants in 2024.” Dr. Feldman says.

Shorter waitlist times and decreased waitlist morbidity and mortality are not the only benefits of living donor liver transplant. 

“Living donor liver transplant is associated with superior graft and patient outcomes and lower rejection rates compared to deceased donor liver transplant,” Dr. Feldman says. 

Additionally, living donor liver transplant allows the date of transplant to be chosen in advance. 

“It can be really helpful for families to know the date of transplant so they can plan for time off from work and arrange childcare for siblings,” Dr. Feldman says. “For children being transplanted due to liver cancer, living donor liver transplant allows the transplant to be perfectly timed in relation to chemotherapy.”

Expanding access to living donor liver transplant

Contrary to common belief, a living liver donor does not have to be biologically related to the patient. In fact, they can be a complete stranger. For children less than 2 years of age, the donor doesn’t even have to be blood type compatible to achieve excellent outcomes.

“Here in Colorado, we have non-directed altruistic donors who are willing to give a piece of their liver to someone they've never met before,” Dr. Feldman says. “Our partners at the University of Colorado have pledged that all non-directed altruistic donor organs will be offered to children on the Children’s Colorado list first before offering them to adults on the adult waiting list.”

Non-directed altruistic living donors are important for removing some of the disparities that exist in transplantation.

“Sadly, it is well-documented that African American and Hispanic candidates and children with public insurance are half as likely to undergo living donor liver transplant compared to Caucasian candidates and those with private insurance. Non-directed altruistic donors allow children who have no directed donor to still reap the benefits of living donation.”

When talking with families coming from another center that doesn’t offer living donor liver transplant, Children's Colorado providers often hear that families worried it would be too expensive to come for a second opinion, as flights to Colorado, lodging and childcare aren’t covered by insurance.

“We as an organization are committed to finding ways to support families so all children can have access to living donor liver transplant,” Dr. Feldman says.

Children's Colorado has partnered with Ronald McDonald House, Brent's Place and Angel Flight, organizations that provide free lodging and flights for families in need, to overcome the cost barriers associated with seeking care. In 2024, 43% of liver transplants at Children’s Colorado were performed on out-of-state patients. 

Living donor advocacy and education

Many families are unaware that United Network for Organ Sharing (UNOS) rules allow their child to be on multiple transplant waitlists, as long as the transplant centers are not in the same UNOS region.

"We've really done a lot of advocacy work this year trying to spread the message of the importance of considering living donor liver transplant,” Dr. Feldman says. "This year, several children have traveled to our center to explore multi-center listing.  Many of them have been waiting for over a year at another center without receiving a new liver.”

Dr. Feldman teamed up with Children’s Colorado transplant surgeon and Surgical Director of the Pediatric Liver Transplant Center, Megan Adams, MD, to speak with families awaiting transplant through social media and webinars. “We want all children across the United States to have access to a living donor center,” says Feldman.

Drs. Feldman and Adams are also meeting with insurance companies to educate them about living donation with the goal of ensuring that living donor liver transplant will be approved for every child.  “Payers can also help ensure that every family with a child in need of transplant is hearing about the option of living donor liver transplant.”

Furthering transplant expertise

Historically, the Children’s Colorado Liver Transplant Program has cared for kids with conditions that require just a liver transplant including biliary atresia, Alagille syndrome, progressive familial intrahepatic cholestasis, autoimmune hepatitis, Wilson’s disease and acute liver failure.

However, the team now also offers simultaneous liver-kidney transplant for children when both organs are affected. One disease requiring liver-kidney transplant that Children’s Colorado has developed experience and expertise in is autosomal recessive polycystic kidney disease, or ARPKD, a genetic disease that impacts the liver and kidneys. “Last year we did several combined liver-kidney transplants for children with ARPKD,” Dr. Feldman says.

“For children with severe liver and kidney disease from ARPKD, there is immunologic benefits to putting both organs in at the same time.” This expanded capability is carried out through the Dual Organ Transplant Program.

Dr. Feldman hopes that the Children’s Colorado Liver Transplant Center can continue to help more children from across the United States.  "My ultimate goal is to have no child die on the U.S. liver transplant waiting list,” Dr. Feldman says.