Wednesday, September 29, 1999
Children's consolidates services to treat related disorders
BY TIM BONFIELD
The Cincinnati Enquirer
Like any toddler's mother, Lori Christopher was full of smiles and encouragement as she dipped the spoon into the mashed potatoes.
Like any toddler's mother, she cheered as her son, Daniel Johannessen, gobbled the food down with a minimum of mess and fuss.
That he could eat a normal meal in a normal fashion was such a feat that a nurse, a psychologist, a newspaper photographer and a reporter were on hand to witness the event.
Daniel represents an early success for a new program at Children's Hospital Medical Center called the Aerodigestive and Sleep Center. Here, children from across America and around the world come to get treatment for medical and psychological problems that interfere with eating, breathing or sleep.
The program, a consolidation of existing services, was started in April to provide a “medical home” for children who previously bounced from specialist to specialist, said program director Dr. Colin Rudolph, a pediatric gastroenterologist.
Some patients come because they must learn to eat solid food after spending long periods on feeding tubes. Some have deep aversions to
food. Some have neurological conditions that interfere with normal eating habits. Some have birth defects or injuries that impede swallowing.
The center also treats some patients with sleep disorders because many airway problems that interfere with eating also interfere with sleep.
Daniel's eating problems were entirely psychological — yet serious enough to almost kill him.
Daniel was born in Russia on Sept. 29, 1997. His parents abandoned him at a hospital in Vladivostok, where he spent the first 10 months of his life before moving to an orphanage. He lived in the orphanage for more than four months until he was adopted in December by Ms. Christopher and her husband, Air Force Lt. Col. Bill Johannessen.
Lt. Col. Johannessen was stationed in Hawaii at the time. He has since been transferred to Little Rock, Ark. Within days of bringing Daniel home, his parents knew they had a problem.
“There wasn't anything he would like to eat,” Ms. Christopher said. “He'd take something like macaroni and cheese and just hold it in his mouth like he was afraid to swallow. Then he'd just let it dribble out.”
“This boy was basically force-fed as an infant,” said Dr. Rudolph. “He learned to associate food with difficulty or unpleasantness. To eat normally again, you have to unlearn that process.”
In Russia, records indicate he was fed mostly potato soup, beet soup and a pasty wheat cereal.
When he was adopted, Daniel weighed slightly more than 13 pounds — well below normal. He could barely tolerate the texture of baby food. In Hawaii, medical tests turned up no evidence of an undisclosed medical problem, such as brain damage.
Ù By May, Daniel had lost so much weight that he needed hospital care. In the hospital, he was fed liquid formula through a nasogastric tube, threaded through the nose, down the throat and into the stomach.
For small children, a nasal feeding tube is a temporary treatment. The tubes are difficult to insert and the children often try to yank them out.
The tube feedings helped Daniel to gain some weight, but if the boy could not learn to eat solid food, he would need surgery to install a gastrostomy tube directly through the abdomen into the stomach.
But one of Daniel's doctors in Hawaii had heard of the feeding team in Cincinnati and recommended that Daniel seek care there as a last-chance effort before installing a gastrostomy tube.
As luck would have it, the couple had relatives in Fairborn, Ohio, where they could stay during a month of testing and treatment.
During its first month, the aerodigestive center saw 56 patients. It expects to treat 15 patients a week as it builds to full speed.
The goal is to simplify the hospital experience for patients who might need a range of tests and consultations with surgeons, pulmonary specialists, social workers and psychologists.
Daniel started a battery of tests Aug. 17 to make sure it would be safe to pull the feeding tube. His treatment began Aug. 23.
A feeding team that includes a psychologist, a nurse, dietitians and speech and occupational therapists took over Daniel's life. In the hospital setting, the boy was offered meals only during structured times.Ù If he refused to eat, he went hungry. Daniel didn't like this deal at all.
“He screamed and carried on for four days,” his mother said. “Suddenly, he decided to eat.”
The feeding team can push harder than many parents can, said Debby Mason, nurse-coordinator for the aerodigestive program.
Denying food to a hungry, screaming child can be hard, even impossible for some parents. But it can succeed in a hospital setting because of the close medical supervision.
Once Daniel started eating, the feeding team gradually introduced a wider range of food tastes and textures.
Not every patient will be such a success for the center. For some, progress will mean using a feeding tube less often. Some may need a lifetime of follow-up care.
But not Daniel. After munching his lunch with no trouble — even as a camera clicked in his face — the feeding team said farewell to an abandoned boy from Russia headed for a new life in Arkansas.
Children's center will be named for Sabin
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