Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: FRIDAY, March 23, 1990 TAG: 9003232865
SECTION: NATIONAL/INTERNATIONAL PAGE: A/1 EDITION: EVENING
SOURCE: CHARLES HITE MEDICAL WRITER
DATELINE: LENGTH: Long
Andy had been undergoing treatment with an experimental drug for several weeks when his condition deteriorated suddenly earlier this week, officials at Bowman Gray/North Carolina Baptist Medical Center said.
Sue Argabright, Andy's mother, said her son died in her arms. After doctors told her that Andy's condition was hopeless, Argabright said she asked that he be disconnected from the breathing machine he had had been using since Tuesday. She then took him for a final walk down a hall outside the pediatric intensive care unit.
"Everything started shutting down," Argabright said in a telephone interview from Winston-Salem. Doctors "told me there was nothing more they could do."
Andy's illness left him blind and hard of hearing. His mental development was slow and he was physically undeveloped, weighing only 10 pounds, 8 ounces.
Andy's heart stopped beating Tuesday and he had to be revived with cardiopulmonary resuscitation.
After his arrival at Bowman Gray Jan. 29, Andy had been plagued with episodes where his heart rate suddenly dropped and he stopped breathing. Doctors put a surgical opening in his windpipe and gave him anti-seizure medications in hopes of controlling the episodes.
Since Andy's birth, life for Argabright had become a series of crises, medical and otherwise. At just 6 weeks of age, Andy was sent to the University of Virginia after his local doctor noticed an abnormally large spleen and liver.
It took UVa doctors 18 days to come up with a diagnosis. Andy, they discovered, was suffering from osteopetrosis, a rare and usually fatal bone disease.
The genetic condition prevents Andy's body from breaking down and reforming bone. As a result, bone marrow cavities - hollow tubes inside each bone where blood cells are made - begin to fill in. Bone deposits in the skull often compress nerves and lead to blindness and deafness. Eventually, most patients die from overwhelming infection because their bodies can't manufacture the blood cells necessary to fight infection.
UVa doctors said a bone marrow transplant was Andy's best chance to live. They began a search for a donor and told Argabright, who had no medical insurance, to begin raising money. The transplant could cost as much at $180,000, they said. Most medical centers require a deposit of $30,000 or more before they will perform a transplant.
In January, Argabright made a public appeal for funds. She had no job, no health insurance, and no husband. Andy was the baby doctors said she would never have. During 14 years of marriage, that prediction held true. But after her divorce, she became pregnant by another man.
Argabright sued Andy's father, claiming he refused to submit to tests that would show whether he was a suitable donor for bone marrow.
The suit got national attention. Argabright was interviewed by reporters across the nation and traveled to New York for an appearance on Sally Jessy Raphael's nationally syndicated talk show. She also made Star, a national tabloid with screaming headlines. "Mom sues lover for bone marrow to save her son's life," the Star headline proclaimed.
Within a week, the suit was settled. Andy's father submitted blood for the tests and was found not to be a good donor.
In the meantime, Andy's increasing problems with breathing resulted in frequent trips to doctors' offices and several hospital stays.
During one hospital visit in late January, Andy had several episodes of seizures and at one point stopped breathing. Doctors discovered he was blind.
The next day, Andy was on his way to Bowman Gray/Baptist Hospital Medical Center in Winston-Salem. With the search for a bone marrow donor going slowly, Argabright decided to let Andy undergo an experimental therapy for his bone disease.
Dr. Lyndon Key believed interferon gamma, a natural protein, can stimulate the cells that help break down and remodel bone. For some reason these cells don't function normally in patients with osteopetrosis. Key theorized that these cells are tied to the body's immune system, which in other studies has been shown to respond to interferon gamma.
After six weeks of treatment, Andy seemed to be responding to the treatment. Key was prepared to continue Andy on another five months of the therapy and Argabright was hopeful she might be able to take her son home.
During Andy's first two weeks at Bowman Gray, Argabright was a constant fixture in the ICU. Since then, she trekked back and forth to Roanoke, trying to arrange fund-raising events and lining up nursing care in the event Andy became well enough to leave the hospital.
Money has been a problem for Argabright. Last summer she gave up her job as a contact lens technician because her pregnancy with Andy caused severe water retention and swelling in her legs. Due to Andy's life-threatening disease, she did not go back to work. She relies on $231 a month in welfare plus food stamps to support herself. She lives in a rent-subsidized apartment in Northwest Roanoke.
Nearly $14,000 has been collected for Andy. Most of it came from contributions sent to the Botetourt Jaycees, which agreed to set up a fund to help pay for a bone marrow operation.
About $2,500 has been raised by friends of Argabright who own Dee and Doug's Rendezvous, a Roanoke restaurant and bar.
Some money has come from more than 100 collection jars distributed to an assortment of businesses.
Medicaid - the government health insurance program for the poor and disabled - is expected to cover much of Andy's hospital bills. But Medicaid would not have paid for a bone marrow transplant.
by CNB