washingtonpost.com
At Hospital, Wresting Control From Spina Bifida

By John Kelly
Wednesday, November 19, 2008

If you have children who complain about the injustices of life -- about, say, the punishing chores they are required to complete -- may I suggest you share the story of Jessica Gregory?

Jessica, a 10-year-old from Forestville, is a stellar reader and an accomplished martial artist. She was born with spina bifida, a congenital disorder of the spine that can cause a variety of problems. Jessica has been visiting Children's National Medical Center since she was a baby. Three years ago, doctors there performed a series of procedures to make possible the bodily functions most people take for granted. A hole in Jessica's abdomen gives access to her bladder so she can be catheterized. Another, called a stoma, is in her belly button and allows the contents of her bowel to be flushed out.

These rituals must be performed several times a day, and almost from the start it's been Jessica who's been doing them.

"They believe in children being independent," said Jessica's mom, Sheila, of the staff at Children's. "They said: 'She has to do this on her own. If you start doing it, she's not going to do it.' "

Jessica was not thrilled by the prospect at first. Sheila drove the point home so often -- you must do this for yourself -- that Jessica appealed to a higher authority.

"I overheard her praying, and she said, 'God, that woman gets on my nerves,' " Sheila said. "I had to get myself together. I had a laugh, then I said: 'You can talk to the Lord all you want, but you still have to do it. I'm not going to do it.' "

Jessica did learn to do it and in the process took ownership of the situation. Mom Sheila and dad William used to call the regular irrigation of Jessica's bowel and bladder doing "the boo-boo thing." One day Jessica announced, "Can we call it 'the fluids'?"

A much better name.

"She's very self-sufficient, which is another thing the hospital trains them to do," Sheila said. The self-sufficiency extends in all directions. When she was younger, Jessica wore braces on her ankles and had difficulty walking. Sheila said Dr. Laura Tosi, a Children's Hospital orthopedic surgeon, told her that Jessica had to learn to pick herself up when she fell. Sheila should resist the urge to help.

When they'd go the mall, Sheila got scowls from shoppers suspicious of the stumbling child's inattentive mom. "People would look at me like, 'Okay lady, should we call child protective services?' "

It was Dr. Tosi who recommended that Jessica do either ballet or martial arts as a way of strengthening her legs. Said Dr. Tosi: "A critical challenge to pediatric hospitals is what happens when [patients] turn 18 or 21? How do we care for the adult with a congenital disorder?"

Research revealed that kids with spina bifida and cerebral palsy were entering adulthood with atrophied muscles, their bodies prematurely aged.

"Working with that knowledge base, I started kicking my kids in the can," Dr. Tosi said. Exercise became critical, not just to help minimize bone loss and help minimize weight gain but to improve morale.

Jessica's parents enrolled her in the Little Ninjas program at Full Circle Martial Arts Academy in Capitol Heights, where her older brothers had been students. Now the fourth-grader has a blue belt in kung fu.

On a recent day at Children's, Jessica stood on one foot, her arms birdlike at her sides. She had assumed her favorite kung fu position: the crane.

Why is it your favorite, I asked. "You get to have fun with it," Jessica said. "You have to stay focused."

Helping Children's

As I admired her martial arts poses, I asked Jessica what she wants to be when she grows up. "A doctor," she said. "That's easy."

When you see the lifesaving work done at Children's Hospital, it's hard not to want to help. It's too late for me to go to medical school. It's probably too late for many of you. But we can make a difference in another way: By taking part in The Washington Post's annual Children's Hospital fundraising campaign.

Our goal is to raise $500,000 by Jan. 9 to help pay the bills of poor sick children. To donate, write a check or money order payable to "Children's Hospital" and mail it to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390.

To donate online using a credit card, go to http://www.washingtonpost.com/childrenshospital.

To contribute by phone using Visa or MasterCard, call 202-334-5100 and follow the instructions on the recording.

What's the buzz on "John Kelly's Commons"? Become a part of it at http://voices.washingtonpost.com/commons.

View all comments that have been posted about this article.

© 2008 The Washington Post Company