One family’s loss brings life to a baby girl

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Addison Rauch is poised to take her first steps. Always an exciting time for any family, but even more so for her parents, Nathan and Olivia, because their little girl might not have made it to her first birthday without the generous gift of another family.

The Fort Wayne couple found out Addison likely would need a liver transplant last spring when she was just 2 months old. Diagnosed with biliary atresia (bile is blocked from flowing into the intestine so it builds up and damages the liver), she became jaundiced and bloated.

She was rushed to Riley Hospital for Children, where her diagnosis was confirmed, and she underwent the Kasai procedure, during which doctors attach a loop of the small intestine to the liver to establish bile flow.

When it works, which is about half the time, the operation provides a path that allows bile to drain from the liver. Unfortunately, in Addison’s case, the procedure didn’t work, so when she was about 6 months old, doctors began the process of getting her name added to the transplant registry.

Riley pediatric gastroenterologist Dr. Jean Molleston has been with the family since Addison first was diagnosed with biliary atresia after she became jaundiced.

“It was apparent that Addison was going to have more and more problems,” Dr. Molleston said. “Fortunately, she got an organ in time.”

In October of last year, Addison was officially listed for transplant, and the family got the life-changing call two days before Thanksgiving.

Talk about giving thanks.

The couple and their then-10-month-old daughter spent Thanksgiving at Riley. Dr. Richard Mangus performed the surgery.

While the Rauches were grateful for the lifesaving gift, they couldn’t help but think about the giver’s family.

“It’s hard to think about – that her liver came from another child,” Nathan said. “Especially going into the holiday season, it was a lot to try to wrap our heads around. It still is. We can never repay them or thank them enough.”

To look at their child today, the difference from pre- to post-transplant is “night and day,” Nathan said.

“Before transplant, she was agitated and fussy, never able to get comfortable. Now, she is happy and curious.”

The process has not been easy, but Addison’s care team, including Dr. Molleston, has helped make the difference, he said.

“She’s been with us since day one. She’s done an awesome job.”

Specifically, he said, the physician has been realistic with them from the beginning, answering all of their questions without sugarcoating anything.

“The biggest thing was just honesty. I appreciated that very much because being a first-time parent it’s all brand new and then you throw something like this into the mix. We didn’t know what was going on, we’d never heard of biliary atresia before, so just having her there to walk us through it, giving us realistic expectations and goals, was awesome.”

For her part, Dr. Molleston said the Rauches have been excellent partners in Addison’s care.

“You can really collaborate with them and discuss pros and cons. They’ve been a delight.”

She also gives credit to the extended Riley team, including transplant coordinator Angi Dickens.

“She does all the real work – makes the phone calls, arranges the labs, ultrasounds, IV infusions,” the doctor said. “She is their go-to person. She’s just great and very dedicated.”

In the end, Addison did great with her liver transplant, Dr. Molleston said. “And now she’s just a fat and sassy, gorgeous baby.”

Her prognosis is good, she added, because transplanted livers tend to last a long time.

Addison, who is immunocompromised because of the medications she must take to keep her body from rejecting the liver, has a tight circle of people who care for her, including Nathan’s mom, a nurse.

But she won’t be a “bubble baby,” Dr. Molleston said, even though she’ll be watched closely for fevers and infections.

“There is every reason to expect a good life. She’ll go to school, she’ll do normal stuff, go to college, have kids. These kids do great. If you saw her, you’d never know.”

Addison celebrated her first birthday in February and continues to do well today, Nathan said.

“I had always heard that Riley was this top-notch children’s hospital, but you don’t really know how great it is until you have to experience it for yourself. I couldn’t be happier with the level of treatment and care she got down there.”

Find out how you can become an organ donor here.