Katie, who has Down syndrome, was born with a hole in her heart.
A high, domed palate, enlarged tongue and hyperactive gag reflex made eating difficult. At 6 weeks, the child was hospitalized for "failure to thrive" and was fitted with a tube down her nose into her stomach through which pumped breast milk was delivered.
Before her heart surgery at 5 1/2 months, Katie was taking a breath a second - about three times the normal rate. She had to work so hard to breathe, she couldn't stop to swallow, says her father, a Hagerstown physician. She almost died after the operation and was on a breathing machine for 17 days.
In August 1996 Katie fainted because vomiting a half ounce of milk caused a sudden drop in her blood pressure, according to her mother. Kathy Delaportas called 911.
Katie's parents turned to Kennedy Krieger for help. Kathy Delaportas stayed with her, bringing along a small television and videocassette player. Therapists noticed that Katie liked watching Barney videos, and the character became a part of her therapy.
One bite at a time
Katie had to be taught to eat, and her parents learned how to feed her. First using a small feeding instrument, later working up to a spoon, upside down then rightside up, it had to be done exactly right, Dino Delaportas says. If the spoon was placed too far into Katie's mouth, she would gag; not far enough - the food would come back out. Katie's food also had to have just the right consistency.
Katie would get to see a little of a video with every bite she took.
"Barney did the trick," says Kathy Delaportas.
At Kennedy Krieger, Katie's naso-gastric tube was replaced by a tube surgically implanted in her stomach. Her eating was supplemented by two nighttime tube feedings while she slept.
Katie became tube free June 12. Even though she's eating now, the process is not easy. Every gram of food is measured. Data is kept about every bite - whether Katie accepts or expels the food, whether she gags, whether her feeding is interrupted.
Katie now can dine without Barney sometimes, and on Thursday, she will have her last follow-up visit in the feeding disorders program.
"I feel so special and so blessed that God picked me to be her mother," says Kathy Delaportas.
Katie, a lively and affectionate little girl who attends prekindergarten special education classes at Funkstown Elementary School, happily occupied herself by looking at picture books and playing with toys while her parents talked about what she's been through.
Dino Delaportas frequently beamed and occasionally was reduced to giggles by Katie's antics.
"God has a plan for Katie's life," he says.
And you have to believe it, not just say it, he adds.