RALEIGH, N.C. (WNCN) — Lindsey Westendorf and Greg Baker welcomed their child, Corbin, into the world on July 1, but it didn’t take long to notice serious symptoms.
“I remember looking over to you and saying something is absolutely wrong,” Westendorf said.
After extensive testing, doctors discovered Corbin has a rare condition called Biliary Atresia, which overloads the liver with bile.
“Over time what happens is you get cirrhosis and fibrosis and the liver can no longer function,” Westendorf said.
According to Boston Children’s Hospital, it occurs once in every 30,000 births.
But, Corbin is also battling a second genetic deficiency, Alpha 1 Antitrypsin Deficiency, that increases liver disease risk.
“His dual diagnosis, there’s not metrics on it, that’s how uncommon it is,” Westendorf said.
Westendorf said Corbin is in stage 3 liver cirrhosis, and the next stage is failure.
Although Corbin is not yet on a transplant waitlist, Westendorf said it will eventually be needed.
“There’s not a way. He would be terminal if he wasn’t transplanted,” Westendorf said.
So, it’s a waiting game.
Every sniffle could bring Corbin in and out of Duke Hospital.
Earlier this year, Duke Health doctors saved another baby with Biliary Atresia, using a section of the living mother’s healthy liver for the transplant.
Westendorf wants to keep all options on the table.
“I’m hoping to be a match,” Westendorf said.
The family provides updates on Corbin’s journey on their online fundraising page.
Finally, October is National Liver Awareness Month.