By Maureen Gilmer, IU Health senior journalist, firstname.lastname@example.org
She’s a tiny little thing with big hazel eyes that seem to take in everything around her.
A ventilator helps her breathe, but her mom and dad pray for the day when the tube will come out and 10-month-old Adah Maust will be able to smile and laugh again.
Adah, the daughter of Ethan and Jordan Maust of Carmel, is recovering today nearly two weeks out from a multivisceral transplant at Riley Hospital for Children at IU Health.
Born with a birth defect called omphalocele, the infant’s intestines were protruding outside her belly. She also suffered a congenital anomaly to the intestines that left her with multiple areas of stricture or narrowing and incomplete formation. She couldn’t eat or drink by mouth, relying on a tube for nutrition.
A multivisceral transplant – involving stomach, liver, pancreas, small and large intestine – was determined the best bet for her long-term quality of life.
It was a far cry from the early days after her birth when her parents thought her condition could be treated relatively easily. When that proved impossible, they transferred her to Riley, where she was placed in the care of Drs. Alan Ladd and Charles Vanderpool, co-directors of the intestinal rehabilitation center at Riley.
Together, the physicians managed her nutrition and growth, while consulting with transplant surgeon Dr. Richard (Shane) Mangus on her viability as a transplant candidate.
Adah’s parents received the call they’d been waiting for May 3. A match was found.
Dr. Mangus and the transplant team worked through the early morning hours of May 4 to complete the complex transplant, beginning at about 1 in the morning. By 9 a.m., they were finished, but it would be another few hours before Jordan and Ethan could see their baby girl.
“It was a really long night,” Jordan said. “But she’s doing well.”
She and her husband take turns staying with Adah at Riley while the other cares for their 2-year-old at home. While it’s hard seeing her daughter on the vent, Jordan has been comforted by the care Adah receives.
“A lot of the nurses on the ICU floor especially know how to comfort babies,” she said. “They’ll rub her forehead and she likes this little comfort bear on her face. They hold her hands. It’s really sweet to watch.
“They even take care of us,” she added. “They make sure we get out for a walk every day and that we’re eating.”
Dr. Mangus has been in daily to check on Adah, who continues to be sedated while on the ventilator.
“Her transplant went very well,” the surgeon said. “She is having a slow, but steady recovery.”
Adah is at high risk for immunologic complications because of an underlying immune deficiency, he said, but he continues to be optimistic, despite the long road ahead.
Jordan is looking ahead as well, strengthened by her faith.
“It’s a bumpy road for transplant and we’re aware of that,” she said. “It’s a long road, but hopefully this will give her a chance at having a pretty normal life, something we didn’t have the possibility of when we got her diagnosis.”
To an outsider, it might seem unusual to perform such a complex transplant involving multiple organs on a baby, but Dr. Mangus said he has performed several in children younger than 1.
“They have done particularly well,” he said, “with low rejection rates and good growth and development. Many of them are now teenagers.”
While Adah is expected to be hospitalized for several more weeks, her parents are hoping she will be home in time for her first birthday this summer.
What a party that will be, and Jordan can’t wait.
“She might actually be able to eat cake for the first time!”
Only 8 months old, baby Adah needs a transplant - Born with intestinal abnormalities, this Carmel girl is thriving under the care of a specialized Riley team, even as she awaits a complicated surgery to replace her stomach, liver, pancreas and intestines.