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His coauthor, Dr. Mitchell Cairo of New York Presbyterian Hospital, one of the earliest investigators of cord-blood transplants, foresees a similar expansion in the field. "We think there is great potential not just for the regular diseases we treat today with stem cell transplants, but in the future to utilize this for a whole host of [non-blood-related] and cancer-related diseases," Cairo says. "But it's not going to happen next year. We see this as a ten- or 25-year process of trying to harness the potential of cord blood."
Of course, guidelines are just generalizations, and there are always exceptions. Had his parents had followed the AAP guidelines, Dallas Hextell wouldn't have been on a plane to Duke University last month for a second chance at a normal life.
Dallas is the Hextells' only child, so they had no other kids who needed transplants. Moreover, since he was conceived through in-vitro fertilization, his parents Cynthia and Derak had been through rigorous genetic screening that hadn't turned up heritable diseases.
Yet during her pregnancy, Cynthia Hextell kept seeing pop-up ads for Cord Blood Registry on pregnancy Web sites. "I had never even heard of cord blood, but I'm a huge researcher," she recalls, so although she really had no reason to think she'd need their services, she sent away for brochures from a half-dozen companies. Although the prices gave her some pause, she ultimately signed up with Cord Blood Registry. "It's the same as medical insurance or life insurance you pay for it but most likely you'll never use it," she decided. "I would rather have spent the money and never used it, than have not spent the money and regretted that I didn't get it."
Her pregnancy was normal, but when Dallas was born, she recalls, "Not even the doctors realized it, but I felt like something was wrong." As a newborn, the parents couldn't get him to nurse. Once they brought Dallas home, they noticed that his eyes were often closed, and he seemed overly sensitive to light, noise, and moving objects. At six months, when Dallas still couldn't sit up by himself, Cynthia brought him to a pediatrician, who said he was fine. Still concerned, she insisted on seeing a neurologist. After a fifteen-minute examination, the neurologist told them their son had cerebral palsy. "It was shocking," she recalls. "We were not expecting that at all. It sounded like a horrible word. I thought it was the end of the world."
At eighteen months, the Sacramento toddler still didn't speak. He could get around thanks to a walker, but couldn't crawl he scooted across the floor on his stomach.
Cerebral palsy is not on the list of seventy diseases, but doctors at Duke have used cord blood to treat a small number of children with cerebral palsy or brain damage, and Cynthia Hextell asked to be put in touch with some of their mothers. The procedure is still in the research phase, and parents are warned there's no way to measure the effect the stem cells have on their kids' brains, or even to know if the transplant provokes changes that wouldn't have happened anyway with age. However, the moms Hextell spoke with said they'd noticed improvement after their kids' transplants, sometimes with speech, sometimes with spastic limbs.
The Hextells were encouraged, but had some doubts. Their insurance wouldn't cover the $12,000 procedure. They also wondered if they should to wait for a more proven therapy to come along later, or in case Dallas needed his cord blood for something more urgent cerebral palsy isn't life-threatening, after all. "There was such a small amount of cord blood," Cynthia recalls. "I have to make this decision am I wasting it on this?" Ultimately, she and Derak decided it would be best to try the transfusion while Dallas was young, and his brain was still developing.
Last month, Dallas Hextell became the ninth child to have such a transplant at Duke. His physician, Dr. Joanne Kurtzberg, director of the Duke University Medical Center's pediatric blood and marrow transplant program, is straightforward about how very experimental this process is. "We don't know if these cells will be able to help them," she writes. "We also don't know how they will help if they do. Theoretically they could help repair damaged cells and/or replace damaged cells. Both are possible, but we don't have a way to know which of these two things might occur in these patients."
If you ask Cynthia Hextell, her son has shown definite improvement in the month since his transplant. "When we returned home, Dallas said 'mama' just five days after the procedure," she notes via e-mail. "He had no speech at all before. His muscle strength has improved greatly and he seems more alert and aware of what is going on around him. He also began to laugh at about a week after the infusion. He never laughed before; he would just kind of screech. He had a lot of sensory issues and would not use his hands to do things, but instead would take your hands and guide them to do what he wanted. Since the procedure he has began to clap his hands and wave, which he did none of before.
"We are very happy with the results and continue to see improvement daily," she continues. "We are thankful for anything the cord-blood infusion gave Dallas to improve his cerebral palsy."
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