Special Report: Family receives happy update on daughter's liver transplant recovery a year and a half later

 

BROWN COUNTY, Wis. (CBS 58) -- Imagine learning your nine-day old baby needs a liver transplant.

That's what happened to the Pennenberg family. Doctors admitted their daughter, Lydia, to the ICU at Children's Hospital at just nine days old.

They frantically searched for a donor liver. But after 33 days, the story took a turn.

And now a year and a half later, there's a happy update.

"How about this one? Yellow," Jessica Pennenberg asked her three-year-old Lucas, and nearly two-year-old Lydia.

These days, Lydia Pennenberg is a typical toddler, learning colors with her brother.

"What's this one, Lucas? Green," the little boy shouted.

And she loves stacking alphabet blocks on the living room floor.

"She's great. I mean, she has a lot of energy, she's all over the place," said dad, Andy Pennenberg.

"Looking at her, unless you know us, or know our story, probably wouldn't know," Jessica added.

She's the picture of health now, but her life started out much differently.

"It just escalated so quickly, that we just didn't really know what was going on, what to expect," Andy said of that time nearly two years ago.

Doctors at Children's Wisconsin admitted Lydia to the hospital and she spent the next 33 days there.

"Things were not progressing. They pretty much tried everything they could," Andy explained.

The couple was told Lydia had acute liver failure -- likely caused by GALD, gestational alloimmune liver disease. It's something impacting only four out of every 100,000 live births in the United States.

"That's when pretty much the path was transplant in order to really save her life," Andy said.

The family first talked to CBS 58 back then -- in March of 2021.

They asked the public to sign up to become donors- taking their daughter's story to the airwaves and social media.

"The status is 1a urgent," Shannon Sova, Froedtert transplant coordinator said, echoing their concerns at the time. "Lydia is very sick, and the criteria is set for a reason."

"But with her being so small, it had to be, the stipulations were like, a healthy adult, because you have to be over 18 to donate. But they wanted it under 80 pounds, essentially," Jessica remembered of the difficult parameters that needed to be met.

A difficult set of requirements to fill, but after more than a month in the hospital...

"On its own and just kind of day by day, things started to get a little bit better," Andy said. 

Her liver started healing itself. Lydia was finally able to return to their home in Greenleaf, near Green Bay.

"Her pediatrician usually when we see him, he likes to call her wonder woman," Jessica said with a smile.

"He's been working in the field for decades, and he's never had a patient with something like that, ever before," Andy added.

Her recovery took about six months -- but now she's growing like any toddler -- maybe even faster.

"She walked sooner than both of our boys and she spent the first month of her life in the hospital," Jessica said with pride.

Lydia had a feeding tube until she was six months old, but doctors say her liver has repaired itself, and will now just need to be checked at her yearly appointments.

"I think it was kind of surreal, like you thought it was coming, but you never really know," Jessica said of the good news and prognosis. 

And while Lydia didn't need a liver transplant in the end, it opened the Pennenberg's eyes to the need for organ donation.

"I think it was really eye opening because the harsh reality is that a lot of people unfortunately die before they find a match," Andy said.

The couple credits their family and strong community for the help they needed to get through this.

"Just a lot of gratitude. I feel like our friends, family, our whole community had our back," Andy said.