Sometimes I muse considering the first person to pioneer certain things. For example, who looked at mushrooms growing out of a decaying log and thought: “Yum”? Or how about the person who said, “Let’s boil that giant, red insect-looking thing with the claws from the ocean”? What was the guy thinking who said, “Go ahead, doctor. Cut a hole in me, poke around and tell me why I feel tired all the time”?

When it comes to anything, there has to be a first. And the rest of us benefit from whoever tries it first. According to TMJ 4, Noah Hudziak was just such a trailblazer. He became the first child with gastroschisis to be treated with a new medicinal lipid.

Gastroschisis is a birth defect when the intestines are partially outside the abdominal wall. In rare cases, other organs may be outside the body cavity as well. The cause is not known, but effective treatment can be achieved in most cases.

Noah’s case of gastroschisis was complicated by the fact that his blood supply to the organs outside his body was severely restricted. He underwent nine surgeries to put sections of his intestines and organs back inside his body.

The lipid treatment was meant to stimulate his liver function. It worked at first. It was working for several months. Unfortunately, his liver began to fail. At that time, doctors told his parents that it was only a matter of time.

Given Noah’s early success on the lipid, other infants have been administered the drug. At present, at least 10 other children have received it.

Noah’s parents, Amber and Tim, are hopeful that Noah’s experiences may help another child. Because there was nothing else that the doctors could do, his parents chose to bring him home so that he could live out the rest of his days in a caring and loving environment.

Read more about Noah by clicking here.

Share a story of when you were the first to do or try something pertaining to rare disease.

Learn more about gastroschisis from our partners Avery’s Angels or the Oley Foundation.