At 4 years old, Clark is tall for his age, all muscle and rarely still. He lights up when there’s a ball in his hands and always wants to play with the big kids – lacrosse, rugby, football, soccer, you name it.

If you met him today, Clark’s mom Kacy says, “You’d never know where he started.” That’s the message Kacy and her husband, Kevin, hope other families take from their son’s medical journey: when your child gets a diagnosis that sounds frightening, having a thoughtful plan, an expert team and the right supportive care can lead to a childhood full of joy and possibility.

An unexpected diagnosis brings rapid answers

Around midway through Kacy’s pregnancy, a routine ultrasound indicated that their unborn child might have a bowel malformation. Their local doctor referred Kacy and Kevin to CHOP, and not long after, they traveled from their Lehigh Valley home for a complete evaluation.  

Tests confirmed their baby had an anorectal malformation, meaning his anus hadn’t formed properly. The type of malformation he was diagnosed with was imperforate anus with a recto-bulbar fistula – his anus opened not to the outside of his body, but into his lower urethra, so stool could only exit through the narrow opening meant for urine.  

When Mom and Dad left that full day of testing and consultations, clinicians had charted a path forward for Clark’s birth and beyond. “It was just such a relief to leave there with information, with a plan,” Kacy says. Surgeon Holly Hedrick, MD, FACS, patiently walked them through unfamiliar terms and possible treatments. “Clark will be the perfect baby,” Kacy recalls her saying. “His plumbing just doesn’t work the way it should right now.”  

A premature arrival kicks off the staged plan

Clark was born at their local hospital earlier than expected, after Kacy developed severe complications. Shortly after his birth, Clark traveled with Kevin by ambulance to CHOP, where he was admitted to the Newborn/Infant Intensive Care Unit (N/IICU).  

Because Clark didn’t have an opening to pass stool, he couldn’t feed normally at first. Anorectal malformations often require several staged surgeries after birth. When Clark was two days old, surgeon Myron Allukian, MD, with CHOP's Pediatric Colorectal Program performed the first stage of his surgical repair by creating a temporary ostomy so that stool could leave Clark’s body safely as he grew.  

Clark spent about a month in CHOP’s N/IICU, and his care extended to the whole family. Before her own hospital discharge, Kacy remembers calling N/IICU nurses from her bed for reassurance, then receiving a follow-up call later.  The nurses dubbed Clark “Superman,” a nod to his name and his grit. 

As Clark grew stronger, CHOP’s team prepared Kacy and Kevin to care for him at home, having them practice ostomy changes on a model before doing it on Clark. The long-term plan was clear but not overwhelming. "The team did a great job keeping our focus on what came next,” Kevin says. “Just hitting the next milestone in front of us, then moving on.” 

Both Kevin and Kacy affirm the vital role their support network played during this challenging time, both for them as parents with a baby in the hospital, and for their older son, Luke. “We were so blessed to have each other, our family, our friends, our CHOP team and our faith,” Kacy says. 

Three surgeries in one year ... then one more

In his first year of life, Clark underwent a three-stage surgical repair: the ostomy, a posterior sagittal anorectoplasty (PSARP) surgery that reconstructed the anus, and then the ostomy takedown to reconnect his intestines so he could stool normally from his reconstructed anus.  

Kacy will never forget the morning everything started “working.” “After the final surgery, the first time he pooped, everyone in the room cheered.” She laughs at the memory. “I never thought I’d be in a room with 20 people cheering about poop.” 

Although the family thought major surgeries were behind them, the CHOP team recommended a spinal evaluation because some children with anorectal malformations also have spinal differences. Clark showed no symptoms, but the imaging showed that he had a tethered spinal cord. Neurosurgeon Gregory Heuer, MD, PhD, stepped in seamlessly, already up to speed through CHOP’s coordinated care model. The surgery was successful; Clark should not need follow-up unless concerns arise.  

Growing into his “Super” story

Clark is now 4. He and his family use simple strategies to manage his day-to-day bowel needs, such as taking fiber morning and night and having a “Clark bag” on hand with a change of clothes in case food moves through his system too quickly.

For parents facing a similar diagnosis, Kacy shares the practical perspective CHOP helped her and Kevin embrace. “Sometimes things are going to happen. We just find a solution and move forward,” she says. “Throughout his life, Clark will have to advocate for himself, so he can continue doing all the things he loves. He’s already learning how his body works and what it needs.”  

The “Super-Clark" nickname has stuck – not a reminder of hardship, but a symbol of how far he’s come. When Kacy asked Clark for permission to share his story, he agreed and said, “I want you to tell them that I’m really strong and that my body works real good.”