Each year, our fund-raising campaign on behalf of Children's Hospital reports on patients who have been treated successfully for serious ailments since shortly after birth. But the hospital does just as well by patients it doesn't see until later in life. Such is the case with a teenager from Fairfax County who did not become a Children's patient until the age of 13. My associate, Alexandra B. Stoddard, reports:
Ryan Snowden loves to play golf, bang the drums and help manage the basketball team at Centreville Secondary School, where he is a freshman. When he grows up, he wants to be a surgeon.
But five nights a week, Ryan's mother hooks him up to a pump. Through a catheter, while he sleeps, he is fed the nutrients he needs to grow. He has had trouble growing since birth because he has great difficulty swallowing and digesting food.
At 15, Ryan weighs about 85 pounds. The lower limit of "acceptable" for his age is 100 pounds, according to his doctors. Ryan is 56 1/2 inches tall. The lower limit of acceptable is 60 1/2.
Ryan came to Children's in August 1988, after he and his family moved to Centreville. By then they had moved six times and Ryan had spent all 13 years of his life battling physical handicaps.
Among Ryan's many disabilities is pseudo obstruction syndrome, a disorder of the smooth muscle in the walls of the stomach and intestines. This ailment slows the movement of food into the intestines. This is potentially dangerous, because when the contents are stagnant they can become infected.
When Ryan was a year old, his stomach had to be removed because it continued to dilate without moving food to the small intestine. Without the stomach, food could pass to Ryan's intestine, but he still suffered from pseudo obstruction. This caused him to lose nutrients that could not be absorbed and to feel bloated constantly.
Ryan also suffers from achalasia, which occurs when the sphincter muscle between the esophagus and the stomach fails to push food down into the stomach. As a result, Ryan had great difficulty eating. The combination of these two disabilities made it difficult for Ryan to grow.
When Ryan was seven, a muscle disorder called Raynauds disease caused him to lose circulation in his left foot. Ryan suffered permanent muscle damage in his left leg and had to have most of his foot amputated. He was fitted with a prosthesis, which allows him to walk normally and run with little difficulty.
Doctors at Children's determined that Ryan was getting weaker and would not continue to grow at a normal rate on his own. So, when Ryan got out of school last summer, he underwent the catheterization surgery necessary to prepare for the intravenous feedings.
When Ryan was ready to start the nightly procedure, Ginny Gebus, a clinical nurse specialist for the Nutrition Support Service, and another nurse helped set up the equipment in the Snowdens' home and taught the family how to use it. Since then, Ryan has gained 18 pounds.
According to Gebus, the nurses' goal is to make the therapy as convenient to the patient as possible. Ryan was concerned that his activities would suffer as a result of the feedings, and Gebus and the other nurses take that worry very seriously.
"If I can deliver this therapy and not hinder them, then I have done my job," Gebus said. "You really don't want to hold them back."
Because Ryan has lost part of the function of his esophagus, he needed several operations to stretch it open. Although each one is supposed to provide relief for one to five years, Benny Kerzner, chairman of the Department of Gastroenterology and Nutrition at Children's, had to perform four dilatation procedures on Ryan. The first one lasted three weeks, the second a month and the third slightly more than a month.
Ryan's determination to live a full life is strong in the face of so many complicated disabilities. "It's not one isolated problem. Just when you think you're overcoming something, something else comes up," said Cathy Snowden, Ryan's mother. "But Ryan's attitude is that it's not going to stop him."
Gebus says that she has learned a lot from Ryan. "You're fortunate if you continue to learn from your patient. He's a great kid," Gebus said. "He's living within a sea of disabilities. I admire him."
Ryan will have to receive intravenous feedings for the foreseeable future, although probably not for the rest of his life. Yet Ryan is far from gloomy. He says he has never had more energy or hope.
His hero is Jim Abbott, a pitcher for the California Angels who has one hand. "He is everything I want to be," Ryan said. "He doesn't worry about his disability. He just does his best, and that's what I hope to be like."
TO CONTRIBUTE TO THE CAMPAIGN:
Make a check or money order payable to Children's Hospital and mail it to Bob Levey, The Washington Post, Washington, D.C. 20071.
THE CAMPAIGN ENDS ON JAN. 18.