As a Waukesha family prepares to say goodbye to their baby, the parents are thankful his legacy will live on through other kids.
Baby Noah was one of the first in the area to try a medical advancement and though it didn't save his life, it paved the way to save others.
"Cherish every moment you have because you never know how short life can really be," said Amber Hudziak, Noah’s mother.
It's been one year and five months since Amber and her husband Tim Hudziak welcomed their first child, but Noah was born with a birth defect.
"He ended up being among the 11 percent with a complicated gastroschisis so he has a narrow blood supply to his intestines," Hudziak said.
In between the baby's nine surgeries there was hope. The parents decided to try a new lipid, which is a type of feeding tube filled with artificial nutrients and fat approved for adults, but not for kids.
"It's still not approved for use in children under the age of 16, but we decided that that would protect Noah's liver...We took an absolute chance and so did the family," said Dr. Praveen Goday, pediatric gastroenterologist at Children's Hospital of Wisconsin.
The lipid helped Noah thrive for months.
"For a little while he did OK and then things of course turned sour again," Goday said.
But by the end of March Noah's liver was failing. The couple was told their son had three months to live.
"There was always those possibilities before the surgeries that he couldn't make it," Tim said.
"A week after that he started bleeding. He started vomiting blood, bloody nose, bloody stool, bleeding from his tube," Amber said.
The Hudziak's then learned they had a couple days left with Noah. That was a month ago.
"Now we're back at the matter of time. I mean we've gotten more time than the doctors told us so we're thankful for that," Amber said.
The couple finds courage knowing their son is helping other kids live.
"He was the first baby around anywhere close to here that's got this lipid and after Noah got this lipid we got approval within Children's Hospital to be able to use it in other babies and right now I would bet that there are 10-20 babies in our hospital who are receiving this lipid and it's protecting their liver right from day one," Goday said.
"Maybe that's the reason Noah was born to bring that special smooth lipid into Children's Hospital to help all the other kids," Amber said.
Noah's liver will eventually shut down.
"One day we're going to put him to sleep and he just won't wake up.... We're just really living in every moment that we still have left with him," Amber said.
Despite what this family is going through mom and dad say they're grateful.
"Even after he passes he's going to continue to save lives," Amber said.
The Hudziak's decided not to move forward with transplants and to let their baby live his final days at home with the one's who love him most. They say their faith has helped them find strength. To learn more about Noah and how to help you can visit this GoFundMe page.
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