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Should
You Bank By
Amy Crelly
By the time Dallas was 8 months old, his parents, Cynthia and Derak, knew something was wrong with their baby boy. He didn’t open his eyes, he had difficulty keeping his balance and controlling his limbs, and he cried constantly. Following her instincts, Cynthia switched pediatricians and got a diagnosis immediately—cerebral palsy, a debilitating form of brain damage that hinders muscle control. Cynthia spent countless hours scouring the Internet, in search of treatments for CP, until she discovered an experimental procedure being developed at Duke University. Through his parents’ determined efforts and with support from family and friends (and support through www.transplantfund.org), the family flew to Duke and 18-month-old Dallas received a transfusion of his own stem cells, retrieved from the umbilical cord blood his parents had banked when he was born. “We didn’t know what the future held for him,” says Cynthia.
The couple didn’t have to wait long to see results from the procedure. “We started noticing small things within a week,” says Cynthia, “clapping, waving…” Bigger things soon followed. Within a month, he was crawling. After six months, he was standing, and a year later, on the anniversary date of his treatment, Dallas took his first steps toward walking. “Every day,” the Hextells tell me, they see more and more improvement as Dallas continues to close the gaps in his developmental delays. More research and testing remain to be done, but Dallas’ progress has encouraged researchers, who are now preparing to give the same procedure to more kids like Dallas, children with CP whose parents banked their cord blood. To Bank
or Not to Bank The Hextells had no way of knowing Dallas would suffer from cerebral palsy (Cynthia’s pregnancy was healthy and all tests came back normal), nor could they have predicted how preserving Dallas’ stem cells might help him, but they decided to privately bank his cord blood based on the possibility that they might be of some benefit. “We were looking into the future,” says Cynthia, “not necessarily what they were able to do right at that time with it.”
Cynthia was adopted and Derak’s family has a history of heart disease--both factors that influenced their decision. “We saw that [researchers] were working on ways to use cord blood stem cells for heart disease,” says Cynthia, “and it took us three years to get pregnant with Dallas, so we thought he was probably going to be our only child. So, we just wanted it more as a form of an insurance policy. You get life insurance, you get other insurance policies, and to us this was just one more form of insurance—hopefully we would never have to use it, but we got it just in case.” In the January 2007 issue of Pediatrics, the American Academy of Pediatrics (AAP) issued a policy statement placing “the odds of a child needing his or her own cord blood stem cells in the future” at an estimated range of “1 in 1000 to 1 in 200,000.” Cord blood stem cells are already used in treating more than 75 diseases (mostly blood disorders, including certain types of anemia and cancer), but in cases like these, patients cannot use their own stem cells for treatment (since their stem cells are likely to replicate the disease pattern). The AAP does recommend private cord blood banking “when there is knowledge of a full sibling in the family with a medical condition (malignant or genetic) that could potentially benefit from cord blood transplantation.” For example, a child suffering from a condition such as acute lymphoblastic leukemia might be saved if a younger sibling’s cord blood proves to be a donor match. Donor matches might also be found through the public banks of the National Marrow Donor Program (NMDP). For these reasons, the AAP discourages parents from viewing private cord blood banking as a form of “biological insurance.” Still, with applications for cord blood stem cells only expected to increase in the future, the decision to bank offers “peace of mind,” for many expectant parents, according to Laurie Finta, M.D., FACOG, and Medical Director-Maternity Services, Labor and Delivery at UC Davis Medical Center. Private
Banking vs. Public Donation Public banking is currently done through the National Marrow Donor Program (NMDP), but once donated, an individual’s own cord blood cannot be retrieved for private use. Cryobanks International handles public donations for Sacramento-area families, and parents who wish to donate (rather than discard) their newborn’s cord blood for public benefit can do so at no charge for collection, though some hospitals or obstetricians may charge a fee. If a tissue match is found, publicly banked stem cells can help patients in need of traditional cord blood transplants, but future treatments may require an exact genetic match. “In Dallas’ case,” says Cynthia, “it had to be his own cord blood. It couldn’t have been a sibling’s… If we had publicly banked it, he wouldn’t have been able to have the procedure he had.” “I would hate to think that somebody didn’t [choose private banking] just because of the financial cost…” says Cynthia. “To us it’s worth a million dollars,” Derak adds. “It was devastating enough,” Cynthia says of getting Dallas’ diagnosis. “You just don’t want to live in regret.” Derak tells me they are contacted weekly by parents who have kids with CP, and who did not bank their cord blood, desperately asking if there’s anything else they can do. According to researchers at the National Institutes of Health, Department of Health and Human Services, stem cells harvested from the pulp layer inside baby and wisdom teeth may one day help restore lost or damaged nerve cells, and private banking options are now available, but many stem cell experts remain skeptical, pointing out that periodontal stem cells do not seem to have the same pluripotent properties as those derived from umbilical cord blood and that many more years of research and clinical trials are needed before researchers might see results anything like those the Hextells saw with Dallas. “They say there’s not a cure,” says Cynthia, “but then we look at Dallas and, although he’s not ‘cured,’ he’s… remarkably better! So, if we do more research, who is to say this couldn’t become a cure?” Cerebral Palsy, she tells me, is the second most expensive disability to treat over a lifetime, yet it gets less than 1% of the funding available for research on disabilities. “It’s such a lonely thing to have a child with a disability,” says Cynthia. “We just want to help other families and make it easier for them… That’s really our mission now, to get funding, to get the word out, and share our story.” To that end, Cynthia and Derak plan to create The Dallas Hextell Foundation, dedicated to education, raising funds for research and treatment of cerebral palsy, and providing assistance to families who need help covering costs like transportation. Asked what advice
she would offer parents reeling from a diagnosis like Dallas’, Cynthia
says, “At first, all our dreams were shattered, and then we learned to
make new dreams. Even though, at that time of diagnosis, you just feel like
it’s the end of the world, it gets easier, and you become your child’s
advocate… You never think that you’re the type that can handle it,
but just being a parent, it’s amazing the strength and the courage that
you have when you know your child is counting on you.” Private
Storage California
Cryobank Inc. Family Cord Blood Services Public
Donation For more information about the Center for Cord Blood at the NMDP, call 800-627-7692. For updates on the expanding network of donation facilities, you can also contact the Cord Blood Donor Foundation: 650-635-1452. |
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