Thursday, December 14, 2017
Health

Toddler fights for his life at All Children's, as advocates push for new infant health screening test

ST. PETERSBURG — Not long after Kye Johnson was born in 2010, the baffling infections started. Colds, pneumonia, bronchitis and painful ear inflammations sent him to the hospital near his DeLand home every few weeks.

Finally, his frightened mother, Alethea Arthur, tried another nearby hospital, where doctors realized Kye had a serious problem they couldn't fix. At a children's hospital in Orlando, Kye was diagnosed with a rare genetic condition that left him unable to fight even the mildest infection: severe combined immunodeficiency disease, or SCID.

In an effort to save his life, Kye was sent to All Children's Hospital in St. Petersburg.

"Without treatment, most of these children die within the first year of life," said one of Kye's physicians, John W. Sleasman. He is pediatric allergy and immunology chief at USF Health, and director of the Jeffrey Modell Diagnostic and Research Center at All Children's.

"Many of these children die undiagnosed because they die of an infection and no one ever knows they had a genetic immune deficiency," Sleasman said.

"Kye is a miracle because most babies diagnosed that late don't survive."

Sleasman, Arthur and other advocates hope that every Florida baby will soon receive a simple blood test at birth to rule out SCID. Approved by the Legislature, the measure now awaits consideration by Gov. Rick Scott.

SCID was dramatized in a 1976 made-for-TV movie starring John Travolta, The Boy in the Plastic Bubble. Today, the National Institutes of Health estimates that 40 to 100 American children are born with the condition each year. If treated with a stem cell transplant before or soon after birth, more than 95 percent of babies survive and enjoy healthy lives. If treatment is delayed for a year, only 10 percent survive.

Screening for SCID requires a drop of blood from a newborn — usually through a heel stick, which is commonly done to screen for other diseases. But the test isn't mandatory in Florida, so unless there is a known family history of the disease, an infant isn't likely to be screened for SCID.

"Newborn screening would revolutionize treatment and diagnosis of SCID in Florida," said Sleasman, "We would be able to detect these babies at birth and they would go on to a stem cell transplant. But it takes the blood test to detect it. These babies look perfectly healthy at birth."

Sleasman joined forces with Heather Smith, who lost a child to SCID in 1993 and founded Lakeland-based SCID Angels for Life. They got the measure approved in the Legislature last year, but Scott vetoed it. Advocates hope that another year of lobbying will have changed the governor's mind.

SCID screenings are routine in 10 states, including Wisconsin, California and New York, and 16 more are considering it.

The condition is rare — an estimated 10 to 15 Florida infants are born with SCID each year — but devastating. Sleasman estimates it would cost the state about $1.9 million annually to screen all Florida newborns.

Early treatment for each positive diagnosis would run about $79,000, according to a Duke University study.

Because Kye, who now is 22 months old, was diagnosed so late, he has been at All Children's since last June. His costs already exceed $3 million.

Arthur, who is 20, dropped out of Stetson University when her child became so ill. Kye's father visits occasionally, but the couple are no longer together.

Arthur has been living at the hospital and the nearby Ronald McDonald House, and is looking for a job. But in the meantime, she notes, she has no way to pay for Kye's care herself.

She said she is talking about her son's case to draw attention to the need for screening.

"It frustrates me that the state hasn't passed this bill," she said. "My son is already costing them more in 10 months than they would pay in a whole year for testing."

Kye had a stem cell transplant in January, after the seven months it took to get him strong enough to undergo the procedure. He's an active little boy who can play and crawl and is learning to walk. He can't yet talk, but is receiving therapy to catch up.

"He's not out of the woods yet, even with the transplant," Sleasman said. "He still requires a lot of medical care to keep him healthy."

Irene Maher can be reached at [email protected]

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