Xavier's Intestinal Rehabilitation after Short Bowel Diagnosis
Rachelle (Xavier's mom): When he was little, little, little, little like a baby. Might sound cheesy. My husband and I, we allowed ourselves to grieve the life we thought we were going to have. And that left room for all the joy that was to come.
Narrator: Xavier was born with a birth defect called Gastroschisis, a condition causing his intestines to be on the outside of his body.
Rachelle: They did the initial repair at birth, and it was only about four weeks later when they did an exploratory surgery to see how everything was healing, that they found that all of the intestines that were on the outside of his body weren't viable. That tissue was removed and that's the first time at five weeks that we found out about the short bowel diagnosis.
Narrator: Xavier was unable to get nourishment through traditional feedings and required total parenteral nutrition (TPN) to receive the nutrients his body needed intravenously, bypassing his stomach.
Paul Wales, MD, Surgical Director, Intestinal Rehabilitation Center: They’re born with a condition that in most cases they've often never even heard of. And then they get into this prolonged, you know, treadmill in the medical system. Multiple operations, very complicated care.
Rachelle: It was a very difficult, I was going to say first year, but really his first three years, he was in the hospital more than he was home.
Narrator: After years of TPN and multiple operations other than a transplant, there was nothing else his hometown hospital could do.
Rachelle: Them saying there's nothing that can be done, really meant there's nothing we can do. So we decided to get a second opinion and we came across Dr. Helmrath and the team here. And it was the first time in a long time that we were presented with some hope that there was an alternative. There was something that actually could be done.
Sam Kocoshis, MD, Medical Director, Intestinal Rehabilitation Center: But he really was incapable of taking anything by mouth. He was essentially completely obstructed.
Michael Helmrath, MD, pediatric surgeon: And so what we wanted to do is we wanted to try to put everything back together in a way that it can't be obstructed. That can happen with these complex surgeries.
Sam Kocoshis, MD: Your insides went from a mess, to something a lot neater. Sort of like what happens to your room right?
Narrator: After Dr. Helmrath had successfully rebuilt his small intestine, Xavier was finally able to eat.
Rachelle: I mean, he had ice cream for the first time at ten years old. Just to give you a sense of how little eating experience he had had prior to this surgery. He didn't know you could eat the cone.
Narrator: Xavier still needs TPN for supplemental nutrition as he grows and will continue to be closely monitored by his care team at Cincinnati Children's.
Rachelle: He's medically thriving. He's emotionally thriving. This condition is part of who he is. It's not all that he is. And if you present everything else to the world, then the medical backpack that follows just doesn't matter.
(Published January 2024)
