Each year during our fund-raising campaign on behalf of Children's Hospital, we tell of lives saved and once-incurable illnesses successfully treated. But Children's is just as successful at treating children with handicaps. My associate, Alexandra B. Stoddard, has the story of a boy with Down's Syndrome. Her report:
Shortly after she gave birth to her son, Ryan, on Aug. 30, 1989, Carol Bailey was told that he had Down's Syndrome. She says she felt "devastated." Dr. Howard Saal, vice chairman of medical genetics at Children's Hospital, who had been called to Alexandria Hospital to examine Ryan, told her to cry until she couldn't cry any more. She cried for three days.
Since many children born with Down's Syndrome have structural heart disease, Ryan was examined soon after birth by Dr. Gerard Martin, a pediatric cardiologist at Children's. He detected a large hole in the lower part of Ryan's heart.
Since Ryan was not having any of the usual symptoms of heart problems, he was monitored during monthly check-ups. He remained healthy for three months, but then began to have respiratory difficulty. So in December, 1989, he underwent open heart surgery at Children's to correct his ventricular septum.
Following the surgery, Ryan had trouble breathing and wasn't eating well. Within two weeks, he developed pneumonia. His outlook was uncertain. Carol Bailey and her husband, Terry, spent that Christmas alternating between the hospital and their Alexandria home so each could spend time with Ryan and their daughter Sara, 3.
However, Ryan improved and was released on Jan. 18. In the 11 months since, he has continued to improve under the watchful eyes of the cardiology department and the genetics team at Children's.
The genetics department, which has cared for more than 700 children with Down's Syndrome, is responsible for monitoring Ryan's development and coordinating his medical care. "We're an unusual group," said Dr. Saal. "Most people approach genetic conditions from a diagnosis point. We get much more involved with the family."
Dr. Saal and Fotini Vavelidis, Ryan's genetic associate counselor, act as a support system that is available for the Baileys at any time. In addition, they recommend medical care and developmental therapies. Dr. Saal sends copies of Ryan's genetic progress reports to Ryan's pediatrician, who is not associated with Children's, and Carol Bailey does not proceed with any treatment for Ryan before talking first to Fotini or Dr. Saal.
Ryan and his parents have enrolled in a P.I.E. (Parent-Infant Education) course, which is an early intervention education program for children with learning disabilities. The parents say they are also thankful to the genetics department for introducing them to P.O.D.S., a support group for parents of children with Down's Syndrome.
"They have gotten us to realize that first of all Ryan is Ryan, and secondly Ryan has Down's Syndrome, but it's not the focus point of Ryan," said Carol.
At the age of 15 months, Ryan is playing, walking and climbing stairs with the energy of a normal child. According to his parents, his development never slowed down during any of his many illnesses and hospitalizations. In fact, he was not expected to walk until he was 2 1/2.
Because he is partially deaf, Ryan is learning sign language. He is prone to ear infections and respiratory problems, and he has the potential for thyroid problems, although none have arisen so far.
Ryan wears special inserts in his shoes to correct another typical Down's Syndrome side effect -- curvature of the ankles. Although Ryan's curvature is only slight, the shoes cost approximately $600, and he'll soon outgrow them.
Ryan has also been reluctant to put anything in his mouth that has a rougher texture than strained baby food. His parents have been mixing strained food with chunkier foods like Cheerios. Meanwhile, a therapist is helping him learn to chew.
Ryan will enroll in a special school when he turns 2 1/2. The genetics team will continue to work with Ryan, and they believe his outlook is bright.
"He will talk and be able to say things that express how he feels. He will go through the school system and be educated," said Dr. Saal. "It is our goal to get him to become a part of society."
The Baileys say they look forward to watching Ryan grow up. "I don't see him any different from Sarah except that he's had a lot of medical problems and he will have special needs," said Carol.
The Baileys said they are grateful to Children's, not only for saving Ryan's life, but for providing an atmosphere where they always felt that Ryan's problems were understood.
"Without Children's," said Carol, "we wouldn't have Ryan."
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.