A long wait is over, another just beginning
'Is this for real?' mom asks when call comes in
Published: Tue, Apr. 22, 2008 12:30AM
Modified Tue, Apr. 22, 2008 06:37AM
E-Mail
Print
tool name
closeZelene Turner couldn't stop smiling.
Doctors at Duke University Medical Center had finally called to say that they had thymus tissue for her daughter Jayla, giving the 7-month-old the missing gland that would arm her body against diseases.
Then, a few days before the scheduled transplant surgery, a devastating setback threw Zelene and James Turner back into despair. The donated thymus tested positive for a viral illness. With Jayla's immune system so fragile, her doctor couldn't risk using it.
THE THYMUS TRANSPLANT
Duke University Medical Center is the only place in the world that does thymus transplants. Dr. Louise Markert developed the surgery, and she's now training doctors from London who will perform transplants in England. A transplant gives babies born without the thymus gland, which is essential to normal immune function, the chance to live a normal life. Without a transplant, infants succumb to infections and generally don't live more than two years.
WHERE DOES DONOR THYMUS TISSUE COME FROM? It's taken from a living donor. Usually that's a baby having heart surgery, because surgeons must cut through the thymus, located in the upper chest, to get to the heart.
HOW MUCH DONOR TISSUE IS USED? A whole thymus gland is not needed to do a successful transplant. Instead, doctors use up to 50 slivers of thymus gland, sliced half a millimeter thick. That's enough to jump-start the immune system in a baby born without a thymus.
WHERE IS THE TISSUE TRANSPLANTED? Unlike most transplants, it's not necessary to place the donated tissue where it naturally occurs in the body. So a patient who has a thymus transplant has slices of donor tissue implanted in each thigh, where it will receive plenty of blood to keep it alive.
WHAT ABOUT REJECTION? Babies born without a thymus don't produce mature T cells, the specialized fighter cells that attack foreign invaders in the body. As a result, transplant patients do not reject donor tissue.
HOW COMMON IS THYMUS TRANSPLANT? Not very. Fewer than 10 U.S. babies a year are born without a thymus, a condition known as complete DiGeorge syndrome. Markert has done about 50 transplants since her first surgery in 1993.
HOW SUCCESSFUL IS IT? About 73 percent of babies who have had thymus transplants are alive today. Markert's first patient is now 14 years old.
Jean P. Fisher
EPILOGUE
Since Jayla's transplant, she has made enough progress to be released from Duke and is now staying at a nearby Ronald McDonald House with her mother. The Turners won't know until September whether Jayla's body is producing mature T-cells. For now, her parents can only hope that she has been cured.
James Turner drives from the family's home in Hertford, near the Virginia border, on weekends, spending weekdays at work in a Virginia naval yard, and tending to Jayla's two older sisters.
Nearing her first birthday on June 25, Jayla is achieving the milestones of any infant -- trying to walk, pulling up and starting to form words. Her first word was "Dada."
THE REPORTING
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.
Related Content
More Saving Jayla
Another thymus was found -- and ruled out. And another.
Each disappointment struck the Turners like a physical blow.
"You get your hopes up, and then it's all washed away," said James Turner, sitting at Duke Children's Hospital during one of Jayla's weekly visits.
Frustration mounted. How long would it take to find a thymus? He and his wife, who had kept Jayla and their two school-aged daughters in virtual isolation for months to guard against germs, could not keep the baby safe from sickness forever.
Already, the Turners had had scares, including a frantic few days in December when Jayla had a nasty cough. Doctors feared she had developed a potentially fatal respiratory illness. It turned out to be a cold, but because of Jayla's faulty immune system, it took nearly a month to clear.
At the height of flu season, Zelene Turner could hardly face the thought of guarding Jayla from the pervasive virus.
Seeing the strain on the Turners, Jayla's doctor at Duke, Louise Markert, announced she would not call again about Jayla's transplant until she was absolutely certain she had usable tissue.
"It's too hard for you to be on the up and down," Markert told the Turners while examining Jayla during a regular visit. "I'd rather you get the call when we're ready to go."
And so the phone fell silent for weeks.
Life on hold
Despite the Turners' worries about cold and flu bugs, Jayla stayed out of the hospital. Apart from her immune disease, she was a strong, healthy baby. At seven months, Jayla stood with help and could even take a few steps holding onto a toy cart. Her little legs kicked vigorously as she lay in her crib, oblivious to the strain her illness placed on her family. Keeping Jayla healthy was a monumental undertaking of cleanliness and diligence.
"Our life is on hold," Zelene Turner said in February.
Living under the isolating conditions necessary to protect Jayla from harm were especially hard on Jazmyne and Zariah, James and Zelene Turner's two older girls. Going stir-crazy at home, they begged Zelene Turner to take them to the mall, to Wal-Mart, even to the gas station -- with or without Jayla.
Time and again, Turner assured her girls that life wouldn't always be this way. After Jayla had her transplant, they could all go out as a family, she promised. But her words brought little comfort.
"Jayla, Jayla, Jayla," 10-year-old Jazmyne complained to her mother. "What about us, Mama?"
March came, and Zelene Turner made a decision. Every Easter, the women of her family gather for a retreat, and Jazmyne and Zariah wanted their mother to take them. Turner made arrangements to take the girls to Charlotte, where her family was to meet. James Turner planned to stay behind with Jayla.
"You watch," Zelene Turner joked with her husband the week before the planned trip. "We'll get a thymus next week."
Sure enough, Jayla's nurse at Duke called Zelene at work the following Wednesday, two days before Zelene and her older girls were to leave for Charlotte.
"Is this for real?" Zelene asked, calling back more than once to be sure.
Jean P. Fisher left The N&O after writing this series. Contact Sarah Avery at (919) 829-4882 or sarah.avery@newsobserver.com.
Get it all with convenient home delivery of The News & Observer.
The News & Observer is pleased to be able to offer its users the opportunity to make comments and hold conversations online. However, the interactive nature of the internet makes it impracticable for our staff to monitor each and every posting.
Since The News & Observer does not control user submitted statements, we cannot promise that readers will not occasionally find offensive or inaccurate comments posted on our website. In addition, we remind anyone interested in making an online comment that responsibility for statements posted lies with the person submitting the comment, not The News and Observer.
If you find a comment offensive, clicking on the exclamation icon will flag the comment for review by the administrators, we are counting on the good judgment of all our readers to help us.
