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First of three parts
Something was wrong with Jayla. Zelene and James Turner's newborn daughter, just days old, stared off to one side in her crib. Her small body pulsed with tremors.
Scared for Jayla's life, the couple rushed the baby to the small community hospital in Elizabeth City where she was born in June. Tests showed very low blood calcium -- the likely cause of her seizures. Doctors administered medicine to stop Jayla's convulsions and referred her for further evaluation to a large children's hospital in the Virginia Beach area.
TODAY: James and Zelene Turner learn that their baby has a potentially fatal flaw.
MONDAY: Only one place in the world can help Jayla -- Duke University Medical Center.
TUESDAY: Time and again, a promised transplant is a false alarm. And time is running out.
This story was reported through interviews with family, doctors and experts. In some cases, reporter Jean P. Fisher was present to capture dialogue; in others, it was re-created through interviews.
Jayla was a delightful surprise for James and Zelene Turner, who had two older daughters and considered their family set. But soon after she was born, Jayla began having seizures, and doctors determined her immune system was faulty. Born without a thymus gland that is essential to producing cells that fight infections, Jayla was certain to die by the age of 2.
There, specialists said Jayla was suffering from a calcium imbalance. They said she would need medicine to supply calcium for the rest of her life. To the Turners' relief, Jayla stabilized quickly with treatment. She looked like any other healthy newborn.
So the Turners returned to their single-wide trailer in Hertford, about 18 miles southwest of Elizabeth City, hoping the seizure medication had fixed Jayla's problem. For a few weeks, all seemed well, and the family fell into their normal routine.
James Turner, 44, known as "J.J.," went back to work in the maintenance department of a naval base in Chesapeake, Va. The couple's two older daughters, Jazmyne and Zariah, returned to elementary school. And Zelene Turner, 43, prepared to return to her part-time evening job as a registration clerk at the hospital in Elizabeth City.
But Zelene Turner hadn't started back yet when Jayla's skin erupted. The baby, then about 2 months old, developed the worst case of cradle cap Zelene Turner had ever seen. Eczema bloomed on her chest and spread to her face, arms and legs, covering even the soles of her feet and the palms of her hand. The rash scaled and wept.
Then Jayla's soft, dark curls began to shed, and so did her eyebrows. She was abnormally flushed, though she had no fever.
"She was really, really red -- she was a red child," recalls Zelene Turner.
Prescription skin creams did nothing, so Zelene Turner bundled Jayla and took her back to the Virginia hospital.
What she heard stunned her.
Left defenseless
Recognizing the skin problems as a likely sign of immune disease, doctors thought that Jayla might have what is commonly known as "bubble boy disease," in which a weakened immune system can't fight infections. Then a chest X-ray turned up another clue: Jayla appeared to be missing the thymus gland.
Zelene broke into tears. She had never heard of a thymus.
A doctor explained that the gland is in the upper chest beneath the sternum, where it plays an essential role in building the immune system. Immature white blood cells flow from the bone marrow into the gland, where they mature into specialized fighter cells -- or T-cells, short for thymus cells. Without T-cells, the body is defenseless against bacteria, viruses and other germs.
Jayla's missing thymus was a possible sign of DiGeorge Syndrome, which is even rarer than bubble-boy disease, the doctors told the Turners. Babies with the most severe form of DiGeorge, which afflicts 10 or fewer babies born in the United States each year, can die from a cold.
"Why is this happening to my baby?" Zelene Turner asked, wondering if the problems stemmed from her being an older mother. But doctors assured her there was no connection.
Going to any lengths
James and Zelene Turner were determined to do whatever it took to keep their daughter healthy. The couple, who met in the mid-1980s while they were students at College of the Albemarle in Elizabeth City, were surprised when Zelene became pregnant. Their older girls -- Jazmyne, now 10, and Zariah, 8 -- came early in their marriage, and the family seemed set. While they didn't consider themselves poor, they had limited financial means to cover the expenses of a complicated illness.
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