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The family moved to Oakland for the four-month process. The actual transfusion, in which Hannah's cord blood was piped straight into Matthew's heart, took less than half an hour, but his recovery from chemo was slow. He vomited constantly. He didn't eat solid food for a month. And it took an unusually long time 27 days before there was any sign his blood cell count was rising. Then there was an agonizing wait to see whose cells they were, Matthew's or Hannah's. If the boy's own cells were growing back, the transplant had failed.
Happily, the blood was 97 percent Hannah's, but Matthew wasn't in the clear yet the chemo had quashed his immune system, and he was still taking drugs to suppress it so it wouldn't attack the transplanted cells. The family returned home, and spent a year in isolation to protect Matthew from germs no visitors, no school, no birthday parties, no church. Lots of hand washing. If he went outside, he wore a mask. At the beginning he looked weak, his mom says: "He didn't gain any weight for a year," she recalls. "He was bald but his hair was growing back. His coloring was off he still had a gray look to him."
But this year, Matthew has turned a corner, growing a few inches, gaining five pounds, going back to school. Now six, he requires no medical treatment beyond a daily vitamin and a little ice cream to help him gain weight. "He's doing great," Dawn reports. If his symptoms don't return by September, the two-year mark, he'll be considered cured.
Does Matthew understand the special biological bond he shares with his sister? His mom thinks so. Not too long ago, she says, the boy confided to his grandfather, "Did you know Hannah saved my life?"
That's the sort of victory Dr. Bertram Lubin envisioned when he founded CHORI's sibling donor program. Originally intended just for families with sickle cell and thalassemia, blood disorders in which Children's Hospital has special expertise, the program quickly expanded due to demand. As with private banks, moms can deliver at any hospital delivery-room doctors collect the blood with a kit provided by Children's, whose staffers talk the obstetrician through the procedure by phone.
The obvious difference is that only families with a demonstrated need can participate. No doubt because of its targeted client base, Children's Hospital Oakland has the world's highest donation-to-transplant ratio: about one hundred transplants from just two thousand donations.
Some commercial banks, including Cord Blood Registry and Los Angeles-based Family Cord Blood Services, also have programs that let siblings of sick kids bank for free when federal funding for the Children's Hospital program ran out, it partnered with ViaCord, which now offers a sibling donation program through the hospital. Lubin says these programs have beefed up the transplant release rates for private companies. Indeed, he says dryly, "If they didn't do it, they would almost not release any units."
That's something the industry would rather not acknowledge Cord Blood Registry, for one, wouldn't provide a breakdown of how many of its transplanted units came via such a program. It's nevertheless clear that privately banked cord blood is seldom used by the donor child. As of June, only 26 of the 203 transplant units released from private banks had gone to the donor, Verter says. On the other hand, at least 37 of Cord Blood Registry's 53 released transplant units; 22 of Viacord's 27; and 7 of Cryo-Cell's 17 went to the donor's siblings.
Yet while few transplants come through private banks, StemCyte's Petz says it's important to remember that they save lives often for kids with no alternatives. "It's very difficult to find a match for some patients," he points out. "If they don't have a sibling that's a good match, they have to go to a registry and they may or may not find a donor that is adequate. If it weren't for cord blood, that would be the end of the story."
Zitlow encourages parents to think of cord-blood banking as a kind of "preventative medicine" that may have more uses in the future. While this year's American Academy of Pediatrics guidelines firmly recommended public over private banking, citing the low odds of use, Zitlow believes the group's analysis is a bit outdated. "It's an area of science that is changing rapidly," he says. "I think we'll start to see those guidelines continue to change."
Even Lubin, who helped write the AAP guidelines, will acknowledge that the science is changing. "It doesn't mean some future research wouldn't prove it to be of value for things we don't even consider now, like diabetes," he says.
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