Meet Kid Captain Drew Hennigan

His prosthetic legs may be one of the first things strangers notice but they’re the last things that define Drew Hennigan.

The 8-year-old West Des Moines boy has undergone numerous procedures at University of Iowa Stead Family Children’s Hospital since he was born with missing fibulas, the outer bone in the lower leg.

“We went to find out if we were having a boy or a girl,” Drew’s mother, Nikki, recalls of her 20-week ultrasound when she was pregnant with Drew. “The technician was kind of looking, and looking again... and she's like, ‘I have to go get the doctor.’"

Nikki and her husband, Gregg, were told their unborn child was missing his fibulas – a congenital condition called fibular hemimelia – and later found out he was missing fingers on his right hand. Those fingers that were there were fused together.

We could see an endocrinologist here (in West Des Moines). We could see an eye doctor here, we could see a pulmonologist here, but we choose to continue to go to University of Iowa Hospitals & Clinics and the Children's Hospital because of how strongly we believe in their care.

“For 24 or 48 hours we were worried whether he would even survive,” Gregg remembers, adding there is no known cause for Drew’s unrelated health conditions.

The couple lived in Iowa City at the time and were already connected to the hospital. When Drew was born, he spent 10 days in the NICU for precautionary reasons.

“There was a lot of support early on, so that was one thing that was a really positive,” Nikki recalls. “What we had researched (with) fibular hemimelia is that either they are wheelchair-bound or they have amputations with the chance at walking. We wanted to give him the shot to do whatever he could do.”

At 11 months, Drew’s lower leg was amputated and he had surgery on his right hand. At 13 months, he had his other lower leg amputated. Then, as a toddler, he had strabismus surgery, to correct eye misalignment.   

“After we brought him home from the hospital, all of a sudden he couldn't sit up, he wouldn't eat, he was lethargic, and we took him back to the ER,” Nikki recalls. “So back in the hospital over something very routine was when we found out he had adrenal insufficiency.”

Drew has since taken medication for the disorder, which occurs when the adrenal glands don't make enough of certain hormones.

“The legs are not the big deal to us,” Gregg says. “The real concern is that adrenal insufficiency, just because he can get sick more frequently, more seriously.”

“We've always said, legs and hand, they don't define him,” Gregg adds. “If someone were to ask me about Drew, his legs would be outside the top 10 of things that I would say about him first.”

Gregg and Nikki are grateful for the care offered in one setting at Stead Family Children’s Hospital, where Drew is still seen, even after the family moved to central Iowa years ago.

“We could see an endocrinologist here (in West Des Moines). We could see an eye doctor here, we could see a pulmonologist here, but we choose to continue to go to University of Iowa Hospitals & Clinics and the Children's Hospital because of how strongly we believe in their care,”

Gregg says. “We feel that he could not get better care than he does through the Children's Hospital from his current team. It's the doctors, but it's also the nurses and the staff and everyone.”

“There's just nothing that comes close to the expertise of care that he receives there,” Nikki adds.

Now in third grade, Drew is talkative and sociable, has taken taekwondo and soccer and especially loves to swim.

“He handles the frequent questions and stares about his legs with an almost nonchalance. ‘I was just born different,’” Drew explains to those who ask, Gregg notes. “Everyone who encounters him loves him.”