As if growing up in one of Chicago’s most dangerous neighborhoods wasn’t hard enough, Darryl Hall was born with a rare condition that caused a foul odor to ooze from his pores as a teenager.
“I was already getting bullied a lot in school just based off of how I looked and how my condition made me very skinny,” Hall, 23, recalled to The Post.
“I would try to act all normal,” he added. “But [kids] would point it out, and it was kind of embarrassing.”
Gastroschisis affects around one in every 2,400 babies in the US. They are born with their intestines outside their body because their abdominal wall didn’t fully form in the womb.
It’s not exactly clear what causes gastroschisis, but research suggests that genetic and environmental factors may play a role. Hall said he doesn’t know why he’s the only one in his family with it.
What’s worse, he has a particularly frustrating case.
“Darryl’s gastroschisis was complicated by ischemic bowel, which is lack of vital blood flow to the bowel,” Dr. Harold Boutte, Hall’s gastroenterologist at the Northwestern Medicine Digestive Health Institute, told The Post.
Hall underwent surgery as a baby to repair the abdominal wall and remove a large portion of his small intestine.
He was left with only 30 centimeters, which were reconnected to the remainder of his colon.
Most newborns have 250 centimeters of small intestine, Boutte said, while the average length for adults is 600 centimeters.
As a result, Hall “developed short bowel syndrome, which compromised his ability to take in adequate nutrition and hydration and required … nutrition through an IV,” Boutte explained.
He had the feeding tube in his early elementary years, eventually weaning himself after bowel-lengthening surgery.
Still, the dietary restrictions persisted. He was instructed not to eat anything with too much sugar or carbs — eschewing the candy and treats consumed by his classmates — to avoid “episodes where I would be out of it.”
“I would be in a state of mind where my body would just be drained out or fatigued,” Hall said, “and I would feel like I’m getting sick.”
But the absolute worst was his funk.
Hall, who grew up on the west side of Chicago, said his mother noticed the dreadful stench when he was 13 or 14.
“I used to get in the shower and get ready for school, and she used to ask me, ‘What is that smell?’” Hall said.
“It just spread out through my nose, my mouth, and it was really horrendous.”
In gastroschisis, the exposed intestines are vulnerable to irritation and inflammation, which can disrupt the normal balance of bacteria. Hall had bacterial overgrowth.
People with short bowel syndrome may struggle to absorb carbohydrates, which end up in the colon. Gut bacteria in the colon ferment the undigested carbs, producing D-lactic acid.
The accumulation of D-lactic acid in the blood is called D-lactic acidosis. It can cause a noticeable body odor.
Boutte said it’s not known why Hall’s unpleasant aroma manifested when it did.
He finally found relief two or three years ago when he was prescribed a thrice-daily antibiotic that clears up the stink. He takes it for 14 days and then takes a 14-day break.
“Every once in a while, it will come back,” Hall said of the smell.
“I can actually tell when it’s about to happen,” he shared. “Usually it gets triggered when I eat too much of a specific food item, like beef or steak or chicken.”
He’ll likely be on the antibiotic forever, Boutte said.
It’s just one of a “mountain of obstacles” Hall has overcome since birth, earning Boutte’s admiration.
“Darryl’s perseverance seems to be innate to his character as a human being,” Boutte praised.
“He is truly an inspiring individual, and I count myself lucky as a physician and as a person to have the privilege of caring for him.”
Hall slowly but significantly expanded his palate since he was a kid, so much so that he became a line cook at a downtown Chicago hotel two years ago.
He decided to go into the culinary field after his mom reminded him of their shared love of cooking shows.
“My goal is to one day open up my own establishment where I can give back to the community and showcase my own hospitality,” Hall said.
“I work in a Latin cuisine restaurant, where it’s kind of upscale,” he added. “I’ve noticed that the type of clientele that we get, we don’t get a lot of minorities. And I want everyone to enjoy this.”
In the meantime, he is sharing his story since Gastroschisis Awareness Month is observed in July and Gastroschisis Awareness Day is celebrated annually on July 30.
He hopes that by raising awareness, people will be more supportive of those with gastroschisis.
“It’s not easy having a condition growing up,” Hall said, “and especially as you get older, not everybody will understand.”
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