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Liver donation gives infant a second chance to grow up

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MADISON (WKOW) -- A Madison baby has new life after a liver transplant while she was just 7 months old.

Ila, is Dana Hellgren and Jadon Scullion's first and only child.

"She has tons more energy than she's ever had and she's a happy kid," her mother said.

Now 9-months-old, that bubbly personality always attracts friends at American Family Children's Hospital, especially after the number of times she's been through those halls.

"There's always going to be something out of your control as a parent, and ours was kind of a whopper," Hellgren said.

Baby Ila's problems began shortly after her birth.

"When she was 3 weeks old, she was struggling to gain weight. She was born at 36 weeks and was really small to begin with," Hellgren said. "She was down in the four pound range when we started really getting worried about what was going on."

Her pediatric hepatologist, Dr. Katryn Furuya, explained she was suffering from a rare condition called biliary atresia. That meant there was a blockage in Ila's liver causing her bile to buildup.

"It was clear at about 5 months of age that looking at Ila's blood tests that her liver was starting to fail," she said.

Ila's skin was turning yellow as her liver got worse and worse.

Ila at six months suffering from jaundice.

"When these things start to happen, we know that these children usually will not survive past a year of age if we don't evaluate them and list them for a liver transplant," Furuya said.

Ila's surgeon, Dr. D'Alessandro, said the infant couldn't wait very long, especially considering deceased donor livers for children are so rare.

"It may be months sometimes before one becomes available and in Ila's case, that would have been too late," he said.

He said her best bet was a living donor, but even that would bring its own challenges.

"We would have liked to have her grow a little bit bigger," D'Alessandro said. "Technically she only weighed about 10 pounds."

That meant the surgery itself would be difficult but also that finding a living match would prove problematic as well.

"Jadon was actually the first person to be tested to be a living donor and overall he was actually a match but too big, just too big," Hellgren said. "She was going to have to grow to twice the size she was at the time for his liver to work for her."

Still searching for a match, Hellgren and her husband asked their extended friends and family, eventually reaching out on social media to see if strangers could get tested.

In two months, seven potential donors were tested. None of them were matches.

"I started feeling a little more desperate when I got tested and I wasn't a match either," Hellgren said.

The couple continued to seek donors, getting more and more anxious as the weeks passed.

Until one night.

"Christmas night actually, we were in Iowa visiting my family. I think it was 12:15 a.m. technically on the 26th," Hellgren said. "They said a deceased donor became available."

For Ila, it was great news, but Hellgren and Scullion knew it came at a cost.

"When she said age and size appropriate that's when it really kind of hit hard that some family had lost their child on Christmas Day and somehow in that moment found the strength to give us hope for Ila," Hellgren said.

The family rushed Ila back to University Hospital and she went in for surgery the next morning.

"We walked her to the surgery doors, the operating room doors and handed her over and 14 hours later we saw her again," Hellgren said.

Ila weeks after surgery.

By then, Ila was a new girl.

"As soon as she was recovered you know a week or so after surgery, it was very apparent her personality was starting to shine through," she said.

Months into her recovery, Ila is spending less and less time at the hospital, though her parents say she'll always be living with the impact of her disease.

"She will have to take immunosuppression medications for the rest of her life which means she's much more susceptible to things like the common cold or flu," Hellgren said.

Still, her doctors said, if all goes well, and she continues to take her medication, she may never need another transplant. Though, her parents say they'll never stop worrying.

"Sometimes as parents we want to keep her in a bubble but we know that she clearly has the energy to be out there," Hellgren said.

For now, they're grateful for Ila's second chance to grow up, especially knowing it meant another family had to make an unimaginable sacrifice.

"The words 'thank you' just aren't enough to thank someone who made that decision in such a dark moment to save your child's life," Hellgren said. "To some other family, it's everything."

In the United States there are more than 112,000 people waiting for organ transplants, 2,000 are children.

Few organ recipients are as young as Ila, but she was one of two children under one-year-old to receive a transplant in Wisconsin in 2019.

With thousands left waiting, Ila's parents want her story to inspire others. They ask every family to talk about what they would do, if they were asked to donate a loved one's organ, even from a child.

They hope if a family ever has to make the decision, that conversation will make the moment a little easier.

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Michelle Alfini

Reporter, WKOW

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