Christopher’s a fighter despite
Prune Belly Syndrome

By Tom Waring
Times Staff Writer

John and MaryAnn Hall were overjoyed in 2002 when they learned they’d be expecting twins.
After all, the Academy Gardens couple had been trying to conceive for several years. MaryAnn suffered two miscarriages along the way. She became pregnant thanks in part to fertility medication.
However, when MaryAnn went to the doctor for her 19-week ultrasound, the test showed a variety of problems with one of the unborn babies.
Five medical specialists told the couple that "Baby A" was not viable, that the child would live for only a couple of minutes. They advised the Halls that aborting the child would save them the emotional pain of holding a funeral.
"All five said the best thing was to terminate," MaryAnn said. "But we didn’t listen."
On Jan. 15, 2003, Christopher and Anthony Hall were born at Temple University Hospital, six weeks premature.
Christopher, older by 23 minutes, was diagnosed with Prune Belly Syndrome, also known as Eagle-Barrett Syndrome. It’s a rare disorder, affecting one in 52,000 births, mostly males.
Individuals lack abdominal muscles, many suffer renal problems and some experience heart, lung, bone, hearing and other defects.
Statistics show that 50 percent of these children die before their second birthday. There is no known cause.
In Christopher’s case, he had surgery only hours into his life. He’s had 20 surgeries since, including a dozen by age 2.
Because his stomach muscles never developed, he couldn’t sit up for 18 months. When he fell, he couldn’t get up. Doctors corrected the problem by moving some of the muscle in his back and on his sides to the stomach.
The boy’s hips were displaced when he was born, and he doesn’t have full mobility. For instance, he cannot sit with his legs crossed.
The 5-year-old has had some bouts of pneumonia in the winter, and a low immune system requires him to stay away from anyone who is sick. His parents were nervous as he approached his second birthday, and they worry every time he gets sick.
Today, he must have a catheter inserted into his belly button every five hours to drain urine. The danger of a urinary-tract infection is always there. Still, all things considered, he is doing well coping with Prune Belly Syndrome. His two kidneys function perfectly, and he’s expected to live a full life.
"Chris is considered a mild case," his mom said.
John and MaryAnn Hall credit their family and friends with helping them get through the last five and a half years. They also have relied on the international Prune Belly Syndrome Network, which they discovered on the Internet.
The family has attended the organization’s annual conventions in Illinois, Massachusetts, California and Wisconsin. It was at last year’s convention in Milwaukee that officials asked the Halls to organize the 2008 gathering. They agreed and have been busy ever since.
"It’s a lot of work," MaryAnn said, "but it’s been going smoothly."
The convention will take place from July 17 to 20 at the Embassy Suites near Philadelphia International Airport. About 110 individuals with Prune Belly Syndrome and their families are scheduled to attend.
All of the guests will be out-of-towners. In fact, the Halls don’t know of any families from New Jersey, Delaware or Maryland dealing with the disorder.
One woman is traveling on eight airplanes to arrive from Australia. A boy who is coming has breathing and feeding tubes, is on a ventilator and has a tracheotomy.
The Halls, who live on Holyoke Road, raised $1,200 at a yard sale that will help fund appearances by the Philly Mummers All-Stars and magician John Cassidy, who is in the Guinness World Records for sculpting 654 balloons in an hour. Guests will receive a T-shirt and tote bag, and MaryAnn is making 500 chocolate Liberty Bells.
Medical experts will speak on the first two days of the convention. The lineup includes Christopher’s urologist, pulmonologist and orthopedist, along with a social worker from the Fox Chase Cancer Center who will discuss the stress on families dealing with Prune Belly Syndrome. Kids will spend the time playing board games and making crafts.
On the third day, characters from Star Wars will entertain the children, who will all receive a toy. The group will then make a trip to the Franklin Institute, courtesy of the Starlight Starbright children’s charity.
On the final day, the adults and kids will eat breakfast before saying their goodbyes for another year.
The Halls think the conventions help Christopher deal with his disorder. "He gets to meet people who have his condition," his dad said.
MaryAnn is looking forward to the lectures by the medical personnel, explaining that parents will be inspired by the words of the doctors who have successfully treated Christopher.
"I want them to hear our doctors say it’s doable," she said.
Some Prune Belly Syndrome sufferers are fathers, and their children don’t have the disorder. They have had successful careers and long lives.
"One guy ran the Boston Marathon last year," John Hall said.
Christopher and Anthony attend a home-based day care while their parents work. John is a computer technician at the Fox Chase Cancer Center. His wife is a legal secretary in Center City.
In September, the boys are looking forward to all-day kindergarten at Our Lady of Calvary. The two are opposites in many ways. Christopher, for instance, has blue eyes and is left-handed. His brother has green eyes and is a right-hander.
At school, a visiting nurse will change Christopher’s catheter. He is being taught to do it himself, but his parents are being cautious because it is such a sterile procedure.
Doctors have told the Halls that Christopher will use a catheter the rest of his life, but then again, they also said the boy would never live.
Christopher has played soccer and tee-ball, but he also wants to play hockey and football and sign up for karate. While his mom is wary about letting him engage in contact sports, the Halls are glad to have a boy healthy enough to consider joining those activities.
The doctors who said Christopher wouldn’t live were wrong, as were the ones who predicted he would not walk after he survived.
"Doctors aren’t always right, and he’s living proof of it," his dad said. "He’s a normal five-year-old boy running around." ••
For more information, visit www.prunebelly.org
Reporter Tom Waring can be reached at 215-354-3034 or twaring@phillynews.com