The strange symptoms started when Rose Barrett's daughter Marjorie was two years old. Random fevers. Vomiting. The Berkeley family's pediatrician wondered if it might be something as innocuous as a sinus infection. "Then one day the disease declared itself," Barrett recalls. "She woke up with a swollen abdomen as hard as a rock. By that evening we were at Children's Hospital Oakland talking to oncologists, completely in a state of shock." Marjorie had neuroblastoma, a childhood cancer of the nerve tissue. Her treatment was to be arduous: She would have surgery to remove her primary tumor, rounds of chemotherapy and radiation, and finally a bone marrow transplant in which her marrow would be removed, filtered to screen out the cancer cells, and then reinserted.
Bone marrow transplants can treat certain cancers and other diseases that attack the blood or immune systems, because marrow is one of the body's few sources of hematopoietic stem cells the undifferentiated cells that give rise to new blood. If the patient's own marrow can't be used, there are international databanks of donors willing to provide matches. But when describing the process to the Barretts, her doctors had a surprising question: Had they saved Marjorie's umbilical cord blood?
It was 1997, and the Barretts had barely heard of cord blood neither had just about anybody else, although it was soon to become transplant medicine's new frontier.
Like marrow, cord blood is a rich source of blood-producing stem cells. It can be collected after birth from the placenta and umbilical cord, and kept frozen in case the child ever needs a transplant. Unlike transfusions from a public marrow-donor bank, a child's own cells are a guaranteed match, which drastically reduces the risk that the body will reject them. Better yet, there's no need to seek a match for a gravely ill child at the eleventh hour the cord blood is already waiting in the deep-freeze.
Doctors now use cord blood to treat seventy diseases, mostly cancers and blood and immune-system disorders that previously warranted blood or marrow transplants. Neuroblastoma is on that list, as are several kinds of leukemia, sickle-cell anemia, and non-Hodgkin's lymphoma. Researchers envision an even broader range of applications. Cord blood is being applied experimentally to combat cerebral palsy and juvenile diabetes. Some investigators believe its stem cells may one day be used for gene therapy, or to heal the ravages of heart attacks, strokes, Alzheimer's, and spinal cord injuries. Advocates of private cord-blood banking often refer to it as a sort of "biological insurance" that will allow people an automatic do-over if serious illness strikes. In case of emergency, please break glass.
Unlike embryonic stem cells, a political hot topic due to their place in the abortion debate, there's barely a whisper of controversy over using cord-blood stem cells. Indeed, the blood is typically considered medical waste, and ends up in the incinerator 97 percent of the time. Over the last decade or so, however, commercial banks have battled for their share of the other 3 percent.
There are public cord-blood banks that accept donations and make the blood available to anyone in need. Too risky, claim advocates for the $250 million commercial cord-blood industry, which sprang up in the late 1990s. In return for ensuring that the donor's blood will always be promptly available, the two dozen or so for-profit "family banks" typically charge $1,000 to $2,000 to collect and freeze it, and roughly $125 a year to store it banking the elixir from birth to age eighteen might run a family around $4,000.
Rose Barrett was an eager customer. Back in 1997, she had to say no when the doctors asked whether she'd frozen Marjorie's cord blood. "They asked me if we saved it," she recalls. "It made me feel terrible, but I don't think it was that common. I don't think they expected we would have saved it." Even if they had, it's not certain the cord blood would have saved her toddler's life Marjorie died in 1998, prior to a transplant, from disease-related complications.
The experience, however, made Barrett aware of cord blood's healing potential. When she later remarried and had two more children, she was determined to bank their cord blood, even though neuroblastoma isn't hereditary Marjorie's oncologist had told her that familial blastoma is "as rare as hen's teeth." Regardless, Barrett says, "It was peace of mind for me. If one of my kids were diagnosed with something horrible, we have a small chance that something might help that I didn't just throw away."
Barrett, an insurance company actuary, weighed her options with mathematical precision. "I figure it's a long-term thing, like buying life insurance," she says. "You want to work with a company that's going to be around." She chose the San Bruno-based Cord Blood Registry, the nation's first and biggest private bank, and the one headquartered closest to the East Bay. The company stores its blood in Arizona, a state not prone to natural disasters important for keeping those freezers running.
Happily, Barrett has never needed the blood she banked for Rosemary and Ryan, now six and four. The conventional medical wisdom is that she never will. Despite all the life-insurance metaphors, privately banked cord blood is a policy few families ever cash in. The vast majority of the eight thousand cord-blood transplants accomplished worldwide to date were unrelated donor matches made through public banks. Others resulted from special programs that bank the blood of siblings in high-risk families where one child already needs a transplant, or where there's a history of genetic disease.
That's why some of the biggest names in pediatric health the American Academy of Pediatrics, the American College of Obstetricians and Gynecologists, the March of Dimes advise families to donate publicly unless they have a history of illness or already have a child in need of a transfusion. These groups caution that private banks often overhype the promise of cord blood, and pressure anxious parents into shelling out for a product they will probably never use. In some countries, including France and Italy, private cord-blood banking is illegal.
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