Emma: Multi-listing for Liver Transplant Pays Off for Texas Family

A journey to the diagnosis of a rare disease

A mother knows. Even though it was Megan and Cole’s first child and the doctors were telling Megan everything was fine, and even though the nurse reading the test results said everything was normal, she knew something was not quite right with her baby.

Emma was born in Texas and developed jaundice six days later, which the nurses said was not serious and would go away. Over the next couple days, she became increasingly irritable and couldn’t hold down milk. After developing a rash, Emma’s pediatrician thought it might be an allergy and put her on a special milk-free formula, but she couldn’t hold that down either. After she got repeat blood tests, Megan saw that Emma’s bilirubin levels were three times higher than normal.

Megan and Cole were referred to a GI specialist who looked at the tests and did an ultrasound and suspected that Emma might have biliary atresia.

Approximately 50% of children with biliary atresia will require liver transplantation by 2 years old. In some cases, a Kasai procedure — surgery that connects a piece of intestine to the liver to make a new path for bile to flow — can help a child avoid a liver transplant. The family decided to try the Kasai procedure to see if Emma could avoid a liver transplant.

Emma got the Kasai procedure, but it unfortunately didn’t help enough to avoid the need for a new liver. Doctors referred Emma for liver transplantation in September 2022 and she was put on the transplant waitlist in November in Texas.

Still waiting for an organ a year later, the family seeks more options

In the spring of 2023, Emma started having more medical issues — she caught parainfluenza and got a secondary liver infection, which led to a 12-day stay in the hospital. Megan says this was the beginning of a downward spiral in Emma’s health, which included ascites (excess fluid in the belly) and cholangitis (infection in the biliary system of the liver).

After waiting a year on the transplant list with no organ offers, Megan and Cole learned that their hospital was closing its living donor liver transplant program. This meant that Emma’s only option would be an organ from a deceased donor. This got Megan and Cole talking.

With their options dwindling and Emma’s health declining, they decided to improve Emma’s chances by putting her on multiple transplant lists, which is known as multi-listing. They did some research and found that the Pediatric Liver Transplant Program at Children’s Hospital Colorado was one of the best in the country with extremely short waitlist times, excellent outcomes and extensive experience with living donor transplantation.

Living donor options and multi-listing offers new hope

Living donor liver transplant is a way to expand the pool of available organs and shorten the amount of time a child must wait.  For a baby or young child, a living donor only needs to give 20% of their own liver and the liver grows back to full size in both the donor and recipient in just a few short weeks. A child can get a liver from any person who is blood-type (ABO) compatible with them. The donor doesn’t need to be related to the child. In Colorado, people from the community have come forward and offered to give a piece of their liver to a child they’ve never met before, which is called a non-directed donation.

Studies have shown that living donor liver transplant shortens waitlist times allowing a child to get transplanted before they become extremely ill.  Additionally, living donor liver transplant results in better patient and graft outcomes and lower rejection rates.

Emma had her evaluation in Colorado in March of 2024 and was approved for listing in Colorado within a week. Four days after being listed, the family got a call that there was a non-directed living donor in Colorado that matched Emma. The transplant was scheduled for a month later. However, a few weeks before the planned living donor transplant, the family got a call that the Colorado program had a deceased donor that was a great match for Emma.

The family drove from Texas to Colorado and Emma received her new liver the next day. The family stayed at the Ronald McDonald House during Emma’s recovery and when she was healthy enough, the family got to go home with a much happier, healthier, more energetic Emma.

“I thought she had energy before surgery,” says Megan. “I was wrong. She has so much energy now, I don’t know where she keeps it!”

Megan says Emma has been growing like a weed and her lab results have never looked better. The family came back in August for a follow-up appointment and will come back for appointments at 6-, 9- and 12-months post-transplant. The family gets lab tests done at a local hospital in Texas and sends the results to Colorado so they can track Emma’s progress with the medications she’s taking to protect her new organ.

Finding hope at Children’s Colorado

Megan says one of the things she noticed about Children’s Colorado was the child-centered approach of the transplant team and doctors. She was surprised when our doctors told her that the ultimate goal was for Emma to do all the things other children get to do like swimming, hiking and playing outside. Other programs had told Megan she might need to limit Emma’s activities but the goal at Children’s Colorado was to get Emma to the point where she could just enjoy being a kid again. As soon as Emma was healthy enough, the family took her to do the things she had been missing out on while in the hospital, like going to the museum, visiting the zoo and hiking.

The other big difference at Children’s Colorado was the living donor liver transplant program. Megan says having this program created more possibilities for Emma. She also says that being able to have the multi-listing option became a big factor in Emma’s transplant journey.

“Listing in multiple programs is a very smart thing to do,” Megan says. Without multi-listing, the family might never have found their way to Colorado and to Emma’s new liver. The family is very happy they chose that path and so are our doctors.