By Maureen Gilmer, IU Health senior journalist, email@example.com
Looking back now, Evalyn “Evie” Robertson says she had a bad feeling that something wasn’t right with her then 3-month-old daughter, Audrey.
It’s hard to believe when you watch a now 3-year-old Audrey race around the lobby of Simon Family Tower at Riley Hospital for Children at IU Health. Wearing a shirt with the words, “So apparently, I’m dramatic,” the curly-haired preschooler has brought a wagon filled with her favorite toys to her appointment with Dr. Girish Rao, transplant hepatologist at Riley.
Born “perfectly healthy” at 39 weeks via C-section, she weighed 8 pounds, 13 ounces.
Mom and baby went home to Columbus after delivery to join Audrey’s big brother, who wasn’t entirely sure he wanted to keep his baby sister at first. Now, the siblings are like two peas in a pod, their mom says.
It was the yellowish tint to her daughter’s skin that first worried Audrey’s mom. Jaundice, caused by the buildup of bilirubin in the blood, may occur if the liver can’t efficiently process red blood cells as they break down. It’s normal in healthy newborns and usually clears on its own.
But Audrey’s didn’t clear up. In fact, it was getting worse. Add to that she was lethargic, fussy and not eating well. As her weight dipped below 8 pounds, she was diagnosed with failure to thrive at 3 months and eventually admitted to a hospital on the north side of Indianapolis, where exploratory surgery revealed the devastating reason behind her symptoms.
Total liver failure.
She was diagnosed with biliary atresia, a disease of the bile ducts that affects infants. Bile is a digestive liquid made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats. In biliary atresia, the bile ducts become inflamed and blocked soon after birth.
The only cure is a liver transplant.
“They didn’t expect her to live past her first birthday if she didn’t get a transplant,” Robertson said. “I was blindsided by it. I never realized you could be in liver failure at 3 months old. And I was in denial that at such a young age she was going to need such a huge procedure.”
After that shattering diagnosis, Robertson took her daughter to Riley. IU Health Transplant at Riley offers comprehensive transplant services for pediatric patients. IU Health Transplant ranks among the top transplant centers in the country by volume and is the largest, most comprehensive center of its kind in Indiana.
What followed were lots of tests, paperwork and meetings with doctors and a psychologist. Audrey was added to the transplant list on July 7, 2018. Early on the morning of July 20, the call came.
Waiting was a nightmare, Robertson said, even if it was only 13 days.
“I couldn’t sleep. I would wake up in the middle of the night in a panic, thinking, what if I miss that call? I felt like my phone never left my hand.”
Still, when the phone rang at 2:31 a.m., Robertson told her mom she wasn’t ready. Marcia Baker was her daughter’s strength in that moment: “We have to be. We have to go,” she told Robertson.
They arrived back at Riley within the hour, then waited for several hours until the transplant was given the green light. Audrey was just 6 months old at the time.
As anxious as she was about her tiny baby going into the operating room, Robertson also felt relief. With her family gathered around at the hospital, she crawled up on the couch and slept as much as she could in between the hourly updates they were given.
“I was mentally, physically and emotionally exhausted, and I knew when she got out of surgery she was going to need me. I tried to take that time to sleep because at that point my mind was eased.”
As she is recounting her experience and corralling her daughter, Audrey’s surgeon, Dr. Richard Mangus, arrives for a mini reunion with the family.
“She looks great,” he says as Audrey continues to run circles around everyone. “I didn’t recognize her.”
As surgical director of pediatric liver transplant at Riley, he has seen his share of children in need of transplants. Liver transplants are rewarding, he said, because children do so well.
“The liver works well, it’s very durable, and rejection rates are low,” he said. “Most of the children in this age group, they grow up and don’t even remember being sick as a child.”
Dr. Mangus, who performs 12 to 15 pediatric liver transplants a year, said it’s technically difficult to operate on a child so small, but the transplant team is so skilled that the operation typically is seamless. The liver itself can last 30 to 40 years.
The most important part of the team, however, is the organ donor, he said. In death, that person’s organs can save multiple lives.
“We need every single person in this country to be an organ donor,” Dr. Mangus said. “There are tens of thousands of people, many children, waiting for transplants, and they all come from people who out of the goodness of their heart donate those organs.”
Becoming an organ donor is an opportunity to be part of saving a life, he said.
“We take care of a lot of very sick patients, especially adults, but the children you get to watch grow and develop and know that it’s because of transplant.”
IU Health performs more than 500 organ transplants each year.
Listening to Dr. Mangus talk makes Robertson emotional, she said, but she echoes his point about organ donation.
“If sharing Audrey’s story could convince one person to be an organ donor, that person could potentially save seven lives and one of those seven lives could be a little baby like Audrey. She wouldn’t have seen her first birthday without it.”
April is Donate Life Month. Find out how you can help here.
Photos submitted and by Mike Dickbernd, IU Health visual journalist, firstname.lastname@example.org