Transplant gives toddler new life

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

For Dr. Kyla Tolliver, seeing young patients like Ace Butler thriving after an organ transplant makes her job pretty great.

Ace, who will be 3 in June, recently came to the Riley Outpatient Center with his mom, Jessica Butler, to see Dr. Tolliver for a follow-up appointment six months after he received a new liver.

Getting his blood pressure checked before going into the exam room made Ace a little weepy, but the bag of cereal he brought with him seemed to make things better.

Dr. Tolliver, who describes the liver as the most interesting organ in the body, specializes in pediatric gastroenterology and transplant hepatology for Riley Children’s Health. She first saw Ace last year when his liver function began rapidly declining.

Ace, the youngest of three brothers, was born with a condition called Alagille syndrome, a genetic disorder in which the liver has fewer bile ducts than normal, causing a buildup of bile that causes injury to the body.

In addition to harming the liver, the syndrome can cause skin, heart, facial, kidney and eye abnormalities.

In Ace’s case, the liver took a beating. He developed cirrhosis, leaving his liver scarred and permanently damaged. His spleen became enlarged, his skin turned yellow, and he was unable to gain weight.

“He just sat, he didn’t do anything else,” Jessica Butler said about her youngest son as the disease took hold. “By last May, you could tell he was declining.”

That’s about when she and Ace met Dr. Tolliver, who began preparing the family for the possibility of transplant. They thought they could push that major surgery out until Ace turned 3, but by summer’s end, it was clear he needed a new liver.

Dr. Chandrashekhar Kubal, chief of liver and intestine transplant for IU Health, performed the transplant last September.

“The disease is a spectrum,” Dr. Tolliver explained. “Some have more severe liver disease, and some have more severe heart disease. Some need transplant, and some may not. Ace had more severe liver disease, so it progressed faster.”

As a transplant hepatologist, she follows pediatric patients when they have liver disease, before they might need transplant, as well as post-transplant.

“We are always monitoring them, supporting families, getting them prepared for what transplant looks like, working with our surgeons, coordinators, dietitians, social work, physicians and support staff,” she said.

For transplant patients, she said, “it’s kind of like trading one chronic disease for another.”

Patients must follow proper nutrition and take daily medications to keep the body from rejecting the new organ.

Ace won’t be able to play contact sports as he gets older, but activities like golf and tennis should be fine, she told his mom.

While he has struggled to gain weight, he added about 2 pounds to his small frame since Dr. Tolliver last saw him in February, so that’s progress.

“He eats everything I put in front of him,” Jessica Butler told the physician.

“We’re getting there,” Dr. Tolliver agreed, adding that kids with Alagille syndrome tend to be smaller than other kids their age, “but getting him transplanted sooner rather than later allows him to better reach his growth potential sooner.”

Seeing her son recover from the transplant has been a joy for Butler, who said Ace relearned to crawl after surgery and now he is walking. He participates in physical, occupational and speech therapy through Riley.

Dr. Tolliver will continue to monitor his progress closely over the next several months, and Ace will follow up with Riley until he is 19 when he will transition to adult care.

“In the spirit of Donate Life Month, Ace is just a great example of the gift that families who donate organs of loved ones provide,” Dr. Tolliver said. “We know organ donation is a hard time for those families, but it is also a celebration for other families. We appreciate all the gifts we receive that allow kids like Ace to go on and live a great life.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org