William, born with a rare congenital condition called Hirschsprung disease, was transferred to UNC Hospitals within days of birth for specialized surgery to repair his colon. The surgery saved his life. Now 11 and experiencing recurrent problems, William is once again under expert care at UNC, this time in the "new" children's hospital. This is William’s story.
One Cool Kid
Ask Wendy and William what they remember most about her middle son, William’s, birth in 2000, and they’ll tell you it was the moment he was put on a helicopter bound for UNC.
“When he was born, he was just swiped away from me the second day,” remembers Wendy, who delivered William at a local community hospital in the family’s hometown of Rockingham, N.C.
Looking back, Wendy recalls her newborn son wouldn’t eat that first day after he was born. She figured it was just his appetite. The next day, however, brought a stunning discovery. The doctor noticed William was regurgitating bile and arranged immediate transfer to UNC.
After a week of tests at UNC, doctors had a name for William’s condition: Hirschsprung’s disease. It is a congenital condition in which the large intestine becomes blocked due to an absence of nerve cells in the wall of the colon or rectum. Without the nerves responsible for the normal wave-like motion of the bowel, children like William are unable to pass stool without assistance. It’s condition that can cause death if not detected in time.
“I’d never heard of the disease,” says Wendy. “It was like a whammy to me.”
William’s pediatric surgeon, Dr. Tim Weiner, sat down with the family and sketched a drawing to better explain William’s condition. A mere two weeks later, Weiner performed a challenging surgical procedure called a reverse, during which he removed a piece of William’s intestine, brought his colon down, and essentially built him a new rectum.
For most infants born with Hirschsprung’s, that single surgery is all they need to gain normal bowel function, but 11-year-old William has had intermittent complications since his initial surgery, complications that have led to more surgeries and countless trips back and forth between Rockingham and Chapel Hill over the years. According to his parents and caregivers, William takes things in stride.
“The trooper, that’s what we call him,” says Wendy. “He can take pain better than anybody and he’s not afraid of anything.”
Dr. Weiner, still William’s doctor all these years later, agrees. “The thing I remember most about William is that he’s got a smirk about him, in a good way,” says the surgeon. “He’s amused by the life around him. He’s never been fearful with doctors and always plays along. He’s just a fun kid to treat.”
“The very first time I met William, he was telling me about his disease and how it affects him on a daily basis,” says Robin DeLoach, a nurse practitioner and part of William’s care team at N.C. Children’s Hospital. “During the whole conversation he kept a positive attitude and a glowing smile. I love seeing that smile when William comes to clinic.”
But even the bravest kid has moments when grappling with a life altering medical condition is almost too much to handle. One fall evening in 2011, William turned to Wendy and asked, “Mama, why does God have me like this? Why am I made like this?”
“And it broke my heart, so I passed it on to Robin (DeLoach), just venting,” says Wendy, “and she was like, ‘Well, we’re going to try to do something special for him.’”
A week later, William took to the field at UNC Kenan’s Stadium to serve as Kid Captain for the UNC vs. Wake Forest football game. The opportunity, arranged by DeLoach, was the thrill of William’s young life and made him feel like one cool kid.
William is now in sixth grade, and although he can’t play contact sports, he otherwise enjoys daily life like any other happy middle schooler. He plays golf and basketball, loves practicing his snare drum in the family’s barn and, according to mom, if the straight-A student is sick, he still wants to do his homework. One cool kid, indeed.
Despite a lack of advances in the treatment of Hirschsprung’s disease since William’s birth, his care team at UNC is hopeful that his most recent surgery will take him through the remainder of the process of his disease. In the meantime, his parents take joy in the simple things.
“It’s been a long, long journey, and I’m glad he’s made it this far,” says dad, William.
“If he can do this, I know I can do this—he’s just eleven years
old,” says Wendy. “It’s a joy for me that I don’t have to worry about
him as much as I did. It’s getting more and more simple.”
A look at pediatric surgery at UNC
William’s surgeon, Dr. Timothy Weiner, believes William’s peace-of-mind can be attributed to the atmosphere in N.C. Children’s Hospital.
“It’s nice to have the whole team, and our mission is pretty clear,” says Weiner. “From the kid-friendly greeters to the nurses to the pediatric anesthesia team, it’s a whole culture that’s devoted to being kid-friendly and family-centered. That William will come in and work with us without a whole lot of anxiety is huge.”
The operating suite formerly shared between women’s and children’s services was renovated in the spring of 2011 and designated exclusively for children. The suite, equipped with six operating rooms in addition to pre-care and post-operative areas, is the largest dedicated to pediatric patients anywhere in North Carolina and welcomes more than 5,000 families each year. The renovation included the addition of extensive mural work painted throughout the perioperative areas and operating rooms, funded through donor support of the N.C. Children’s Promise.
“Despite William’s maturity, coming to the hospital and having surgery is a scary time for all children, young and old,” says nurse practitioner, Robin DeLoach. “Having a ‘kid-friendly’ place makes the hospital seem less intimidating and scary. The staff is all specially trained to care for children, which makes a big difference in the interactions that occur between patient and hospital staff.”
William’s mother, Wendy, remembers watching construction of the new Children’s Hospital during William’s first inpatient stay at UNC. She remarks that while many things have changed, certain things—the important things—remain the same.
“The building has changed, but the care didn't,” says Wendy. “No question is a dumb question, and there’s always somebody to hold your hand. I can call or email them when I have a feeling that something is wrong. They are so busy and have so many cases, but they always find the time to call me back. They get more than an A-plus for that.”
Straight-A student, William, would be proud to hear that.