After liver transplant, toddler is bubbly and bright

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

Navy May, 2½, does not look like a child who’s just had a liver transplant. She is busy playing with toys and blowing bubbles on a play mat in her room on the ninth floor of Riley Hospital for Children, eight days after receiving a new liver.

She is happy – and bubbly – as she tries to capture the delicate bubbles floating around her while her mom, Lida May, keeps her entertained.

Navy, who was named by her older sisters when her parents couldn’t agree on a name, has amazed her care team with her quick recovery.

Dr. Richard Mangus, surgical director of the IU Health intestine transplant program and pediatric liver transplant program, performed Navy’s surgery at Riley on April 12.

Dr. Jean Molleston, veteran hepatologist and former chief of Riley’s GI, Hepatology and Nutrition division, has been seeing the little girl since Navy was just a couple of months old, not long after she was diagnosed with biliary atresia at the Evansville hospital where she was born.

Biliary atresia is a rare, life-threatening pediatric liver disease where bile ducts are blocked or absent at birth, trapping bile and causing rapid liver damage (cirrhosis). It is the leading cause of pediatric liver transplants.

“It is wonderful to see her looking so bright and full of energy,” Dr. Molleston said about Navy’s progress Monday. “Her mom worked so hard to get her here – tube feeds, long drives to Riley, lots of visits.”

Navy was listed for transplant when she was just a few months old, but when her liver numbers improved, she was taken off the list, only to be re-listed the next year when she began suffering repeated episodes of vomiting and was not growing.

When Lida and her husband, Zack, got the call that a liver was waiting for their daughter, they hopped into their car and made the three-hour trip from Poseyville, Indiana, to Riley last weekend.

They’d already had a dress rehearsal of sorts months earlier when they made the same drive in hopes that another liver donation would be the answer to their prayers. That time it did not work out, something the transplant team prepares families for as best they can.

“They tell you not to get your hopes up, so the first time was kind of scary,” Lida said.

This time, however, all systems were go.

“As far as the surgery part, my husband and I felt confident we were doing the right thing and that everybody was going to do their job. It was nice to have that assurance.”

They also were comforted by the prayers lifted up for them by their church congregation.

“We have an amazing support system at home,” said Lida, who has been staying with her youngest daughter in the hospital for the past 10 days. Zack has been able to spend part of that time at Riley as well. Over the weekend, the whole family was together for a visit, which delighted Navy.

“When they walked in the room, it was just a world of difference,” the toddler’s mom said.

Navy is doing so well she likely will be discharged this week, though mother and daughter won’t be going home just yet. They are hoping to have a room at the Ronald McDonald House for the next few weeks as Navy will require frequent clinic visits for the first month, followed by isolation at home until her immune system recovers.

All the sacrifices are worth it to see their little girl happy and thriving, her mom said.

“We’re grateful that she’s had an easier experience (with transplant), even though the hospital stays are never fun. But I can say that being here, the staff make it so much easier. She loves everybody – until she knows they’re going to poke her.”

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