For girl awaiting transplant, homeroom is her bedroom

This Just In...

August 28, 2002|By DAN RODRICKS

ANOTHER SCHOOL year begins in Baltimore County, and Stephanie Brittingham attends by telephone. Her teachers came to her Parkville house Monday, gave her books and set up a speaker phone on the desk in her bedroom. Yesterday, Stephanie dialed up a science lesson at 10 a.m., math at 11 and social studies at 1 in the afternoon. She's a sixth-grader who won't see the inside of a classroom or study with classmates this year, and that's how it goes when you're 11 and tethered to an intravenous tube, on the long end of a wait for an organ transplant.

Some kids just don't get to go back to school the usual way.

"On Monday, Wednesday and Friday, Stephanie gets English from 10 till 10:50," says her stepfather, John Branche, who has been caring for the girl for the past year while her mother, Natacha, goes to work each day at Diamond Comic Distributors in Timonium. "On Tuesday and Thursday, she gets science, math and social studies. It's like a conference call. She has to dial a central number by a certain time, put in a personal ID number and then she's in the classroom, so to speak. Today was the first day, and Stephanie seemed pretty responsive to it. Her teachers' voices were nice and clear."

Branche acknowledges a preference for the home teacher visits Stephanie got last year, but he'll give the "distance learning" a chance for the time being. "If Stephanie needs additional help, a teacher will come visit her," he says.

The back story on this: Stephanie Brittingham was born with a rare defect - her small intestine did not rotate during fetal development and settle into a specific place in the abdomen. "It was, for lack of a better word, floating inside her," says Branche. "Because her intestine was not properly placed, it twisted on itself, cutting off its own blood supply."

This was discovered last fall, after Stephanie complained of stomach pains, after a surgeon removed her appendix, after she suffered infection, after the girl went into cardiac arrest and had to have several blood transfusions. And then there was the kidney failure and several weeks of dialysis.

The twisting had caused most of her small intestine to die. Out of the 20 to 25 feet of small intestine with which Stephanie was born, surgeons had to remove all but about 3 centimeters.

"Since the small intestine is a key organ in the breakdown of food, absorption of nutrients and disposal of waste, [this] means she can no longer get nutrition by eating," says Branche, who has done considerable homework on the short-bowel syndrome that so dramatically changed Stephanie's life 10 months ago. "She will receive her nutrition intravenously the rest of her life, providing she doesn't have liver failure."

Risk of liver failure is real and serious. So are complications from the intravenous feeding.

So Stephanie Brittingham is on a waiting list for a rare intestinal transplant at New York's Mount Sinai Medical Center, which claims the first such transplant, three years ago. The hospital does about 20 each year - a fifth of the total performed annually worldwide.

Branche thinks Stephanie's hospital visits, surgeries and treatments have cost close to $600,000 so far, and he and his wife have been warned that the transplant could cost as much as $350,000. Then, Stephanie is going to need medication for the rest of her life, and that could cost $15,000 a year, for starters, according to Branche.

The family's insurance coverage is good. But Branche is anticipating a lot of other expenses associated with the transplant - whenever it might come - that will not be covered by their insurance. Stephanie could end up spending many months in a hospital room in New York.

So he's spent a lot of time doing what people in this situation so often have to do - lining up financial donors while his stepdaughter awaits an organ donor. He's contacted TV stations and newspaper columnists, foundations and companies. "My wife and I are very worried we won't be ready financially once the organ is ready," Branche says.

Branche first contacted me in May. I had been putting off writing this column. And then it hit me this week. I'm coming off a nice summer, with plenty of time spent with my kids - biking, hiking, fishing, kayaking, playing tennis, swimming. And my son has a new book bag, my daughter new clothes. And I think of Stephanie - waiting for a transplant, attached to an intravenous tube, up in her room, going to school by telephone - and I count my blessings.

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