Catherine

When it came time for Catherine to choose a college, no one was surprised to learn her first choice was the University of North Carolina at Chapel Hill. After all, Catherine had been going to UNC her entire life, since as a newborn she was diagnosed with intestinal pseudo-obstruction. Now a UNC sophomore, 19-year-old Catherine is paving her way to a bright future despite having a chronic medical condition that forces her to fulfill all her nutritional needs intravenously.

A Bright Future

Recovering from one of many gastrointestinal surgeries she had early in life, Catherine started kindergarten a week late. Her physical education teacher, understandably protective of the new student perceived as so fragile, gestured to Catherine on her first day of class and said, “Just sit there, and don’t move.”UNC pediatric gastroenterologist, Dr. Steve Lichtman, diagnosed Catherine with intestinal pseudo-obstruction at 5 weeks olds. Says Catherine, 'I've grown up with him.'

Catherine observed her classmates, the bravest among them taking turns climbing a rope that led to a bell on the ceiling while the less brave stood aside watching. After some moments, the 5-year-old turned to her teacher and asked, “Is it going to be like this all year?” The teacher looked back her, likely a bit perplexed. Catherine continued, “My momma never tells me no. She lets me try everything, and then I get to decide if it’s something I can or can’t do.”

Impressed by Catherine’s gusto, the teacher relented. Catherine climbed all the way to the top of the rope and rang the bell. Inspired, many of her more timid peers, in turn, did the same. If the “sick” girl could do it, certainly they could, too.

The “don’t tell her no” theme is one that’s replayed throughout 19-year-old Catherine’s life. She grew up playing basketball, soccer and was even one of the top-ranked players on her high school tennis team in her hometown of Lumberton, N.C.—all this despite having been diagnosed with intestinal pseudo-obstruction at 5 weeks old.

As the name infers, pseudo obstruction doesn’t involve any physical obstruction, like a tumor or mass. Instead, the rare condition is one of motility. Catherine’s intestines lack the ability to move food through the intestinal tract. Since her diagnosis at UNC in June of 1992, Catherine has met all her nutritional needs through total parenteral nutrition, or TPN. TPN enables Catherine to be fed enriched IV fluids via a catheter connected to a vein in her heart.

In the early years, Catherine was treated at UNC five or six times a year. Now she has follow-up visits with Dr. Lichtman once every six to eight months.“Looking back on it, I can hardly remember a time before this was our life,” says Catherine’s mother, Darlene, who, with her husband, Joe, was taught to feed Catherine via TPN by a UNC infusion nurse who spent a week with the family in Lumberton after their daughter’s initial discharge from the hospital at 6 weeks old. “It’s Catherine’s normal.”

Only Catherine’s “normal” is very different than that of her peers at the University of North Carolina at Chapel Hill. The soft-spoken college sophomore does not share her dorm room with a roommate. She needs the extra space to store the medication and TPN bags she receives weekly to manage her condition. Eating consists of hooking herself up to an infusion machine in her dorm room for a total of eight hours every day.

It’s something her parents used to help her with. In fact, with the exception of hospitalizations in Chapel Hill, Catherine had never been away from home or her parents before starting college, yet remarkably she approaches this complicated daily routine—completely on her own—like she would brushing her teeth.

“You have to plan around what you want to do and when you want to get the infusion going,” she says. “If I have plans with people, I don't want to be hooked up.”

Darlene and Joe are happy to see their daughter thriving at UNC, the college she picked out at age 3 when she decided she wanted to become a doctor. On one hand, they never doubted it. On the other, they take comfort knowing Dr. Steven Lichtman, Catherine’s gastroenterologist since birth, and N.C. Children’s Hospital are right on campus should anything go awry.

Catherine, now a sophomore at the University of North Carolina at Chapel Hill, is a biology major considering medical school.The biggest risk, Lichtman explains, is life-threatening infection. The intravenous line into the heart must be kept sterile at all costs.

“In Catherine’s case, she’s had maybe one or two infections at the most, which is just amazing and shows how well they take care of the line,” says Dr. Lichtman. The pediatric gastroenterologist has offered to take care of the nearly 20-year-old Catherine as long as she likes.

Given the rarity of intestinal pseudo-obstruction (the pediatric gastroenterology program at N.C. Children’s Hospital, for example, only follows a couple other patients with the condition), science has made virtually no progress in finding a cure. Eventual bowel transplant, with a success rate of about 50 percent, is a possible option, but at least for now, the always optimistic Catherine is staying the current course with TPN.

And true to her “don’t tell her no” nature, Catherine’s not letting anything hold her back. The biology major is still considering medical school like she vowed at age 3 and enjoys playing intramural tennis with friends. She’s even planning a six-week trip to Spain at the end of the school year.

As her father, Joe, describes it, Catherine could sit in bed and pull the covers over her head—no one would blame her—but she’s just never been that kind of kid.

“She scares us to death, but we’re so proud of her,” says mom, Darlene. “She has such a bright future ahead of her.”

About Pediatric Gastroenterology at UNC

Established in 1977, the Division of Pediatric Gastroenterology (GI) at the University of North Carolina at Chapel Hill was the first of its kind in North Carolina. It continues to be a leading state and national authority in pediatric GI, providing care to children all across North Carolina and from neighboring states.

The division's caregivers treat children with a variety of common and uncommon problems affecting the esophagus, stomach, intestines, liver, biliary tree and pancreas. They perform an extensive range of related procedures, consult on nutrition, gastrointestinal and liver problems, and provide care for children before and after liver transplants, while also managing complex nutritional problems and care for patients like Catherine who require total parenteral nutrition or tube feedings.

Learn more about N.C. Children's Hospital's pediatric gastroenterology program.
 

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