The Hextells say that parents deserve to know the truth about these potential benefits of private cord blood banking, and that influential medical organizations are wrong to discourage the practice.
"We get letters and e-mails from parents who are so desperate, and they didn't bank their baby's cord blood," Cynthia Hextell said. "For them, it's too late."
Disorders such as cerebral palsy, juvenile diabetes and head injury affect thousands of children each year, said David Zitlow, a senior vice president with Cord Blood Registry, with which the Hextells collaborate. It has 240,000 clients.
"The odds of using cord blood has been an ongoing debate," Zitlow said. "But the debate is changing. . . . The chances of having cerebral palsy are 1 in 278 births."
The option to bank umbilical cord blood has been available to parents of newborns for more than a decade, albeit at a price: about $2,000 for collection and $100 per year for storage. At least a dozen companies offer to extract the blood and store it for private clients.
Cord blood can also be donated to public banks for use by strangers who need it, an option major medical groups recommend over private banking.
Today, about 3% of families privately bank cord blood. At Cord Blood Registry, one of the largest banks, enrollment rose 26% from 2007 to 2008.
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Promise versus hype
Some medical experts, though intrigued by the research, say it's much too early to encourage parents to bank their child's cord blood for his or her future use. They say no scientific evidence exists yet to show that any of these therapies are beneficial in humans.
"We really don't know how to separate promise from hype," said Dr. George Daley, a hematologist and stem cell researcher at Children's Hospital Boston. "There have been many instances where what looks like a miraculous improvement in an investigational therapy ultimately doesn't pan out."
Kurtzberg said she remained troubled by the publicity that her trial and Dallas Hextell have elicited. She notes that her study, which she hopes to publish next year, does not have a control group for comparison -- children with cerebral palsy who did not receive the cord blood treatment.
"You have to sort out what is progress you see and progress they would have made without the treatment," she said. "That is pretty difficult to do."
She has expanded her research to newborns with obvious brain damage from a lack of oxygen, who are known to be at risk for cerebral palsy. She will compare children treated with cord blood stem cells and a group of similar, untreated children. They will be followed for four years.
Dallas Hextell now attends a regular preschool and also receives speech therapy. He only speaks a few words, but has no other developmental delays.
The Hextells have joined Cord Blood Registry to promote cord blood banking, conducting media interviews and speaking recently at a medical conference sponsored by the company. Cord Blood Registry pays the Hextells for their travel expenses and time away from their jobs, according to a company spokesperson.
They continue to credit the cord blood infusion for their son's progress. "It happened so quickly," Cynthia Hextell said.
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shari.roan@latimes.com
