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As Rosa understands it, cord blood will safeguard Emily against many diseases. "When I read about the cord blood, I understood that the cord takes care of some kinds of disease. They've done about 70 diseases."
Yet, neither Rosa nor Matt has spoken to anyone from Cryo-Cell. They say they get their knowledge of the benefits of banking cord blood from their doctor, Zafran. James and Sandra Rosenberg, a young family in Deerfield Beach, are two more of Zafran's patients. They've decided to bank their first child's cord blood with Cryo-Cell, even though Zafran told them that the chance they'll use the blood is small.
"We've been trying for so long to have a child of our own," James says. "We're blessed right now by having this child, so if anything was ever going to happen... They say cancer, leukemia; they say the cells would help. We've been waiting for so long and trying for so long that I do not think that you could really put a price tag on your child right now. We're going to take every precaution we can." Though Zafran educates patients about the slim odds of using privately banked cord blood, both the Simmons and Rosenberg families told New Timesthat, contrary to that point of view, their banked cord blood could someday save their children. Advertised as a "perfect match," that's actually the very reason cord blood is useless to the donor the blood can include the very diseased cells that may be afflicting the child.
"It's kind of like a transplant of an organ," says Kenneth Worth, a California lawyer who filed suit against a private cord blood company after considering the procedure for his own son. "It doesn't do any good to get your own bad heart or kidney back."
Even Gerald Maass, Cryo-Cell's executive vice president, cautions that "in general, it's not the best choice for someone to receive their own stem cells."
Zafran says the same thing. "It's really not for this child it's for the sibling."
Maass says that Cryo-Cell makes it clear to its customers that they are banking on the possibility of future medical advances, not current science.
"Banking your cord blood is about hoping that your child doesn't get leukemia," Maass says. "The whole procedure is a bit of a safeguard. What parents who participate in our service are doing is they're taking the opportunity to collect the cells when their baby is born that in five or ten years might provide some therapeutic values."
In late 2002, Tracey Dones' 4-month-old son, Anthony, hovered near death in Schneider Children's Hospital in Long Island. The Dones family had banked Anthony's cord blood with Cryo-Cell when he was born in July, hoping, like most parents who use the service, to provide their son with a ready supply of stem cells should he ever need a transplant. Four months later, Anthony had been diagnosed with the rare genetic disease osteopetrosis, an inherited malady that affects bone growth and can cause blindness, paralysis, and death.
Today, thanks to umbilical cord blood, Anthony is a blind but otherwise healthy 4-year-old child whose disease is considered cured. His story has been told widely as an example of the miraculous hope of cord blood banking, and his mother's testimony before Congress was integral to the passage of a bill funding public banking.
But the bag of blood from Anthony's own umbilical cord is still sitting in a freezer in Florida, unused.
Weeks before Anthony's life-saving 2002 transplant of publicly banked cord blood from the New York Blood Center, Tracey Dones called Cryo-Cell and spoke with a nurse, informing her that doctors said that Anthony's cord blood was worthless to him because it contained the same genetic deformity that caused his disease in the first place.
Dones says that the nurse didn't sound surprised but instead told her that another Cryo-Cell customer had just been diagnosed with a genetic disorder, Diamand-Blackfan anemia. That family couldn't use its stored blood from Cryo-Cell to treat its child's illness either.
Cryo-Cell currently lists both osteopetrosis and Diamand-Blackfan anemia on its website as examples of diseases that have been treated with cord blood. In small print, the company offers a caveat: "autologous (self) stem cells may not be useful in the treatment of certain above diseases."
Dones says today that she still wonders what Cryo-Cell believes it's selling people. "I'm sitting there like, 'Why are you in business? What are you storing cord blood for if people like us can't use it?'
"All this time, I was like, 'This can't be right what they're doing.' I want to know how many times people have called them up and said, 'My child is sick; I need my child's unit,' and how many units were shipped out. I'm going to tell you right now none."
Cryo-Cell disagrees. On its website, the company says that 14 times, it has had "successful cord blood transplants for diseases."
Of those 14 cases, six involved a child using its own blood and the other eight involved siblings or other close relatives. Two cases involved severe cases of diabetes.