A companion photo essay can be viewed here.

When Lizette Wilson was pregnant with her first child about four years ago, the El Cerrito, California, resident wrestled with all the usual questions expectant mothers face. Go natural or get an epidural? Who to pick as her child’s pediatrician? And what color to paint the baby’s room? Yet one decision caught her off guard: Did she want to bank her newborn’s cord blood?

 

She’s not alone. Today’s mothers-to-be are being targeted with pamphlets in obstetricians’ waiting rooms, ads in magazines aimed at expectant mothers, and direct mail appeals from marketers that somehow know they’re carrying a child. For Wilson, the various pitches were heady, promising a once-in-a-lifetime opportunity to capture the stem cell-rich cord blood at her child’s birth. Doing so could someday provide miraculous lifesaving treatments should the child or another family member be stricken with a range of deadly diseases, the message went.

 

“Jeez Louise, they make it sound like your kid’s going to come after you saying, ‘Mommy, you could have saved me.’ It’s pretty intense,” says Wilson, now a mother of two who works with her husband in their digital home entertainment business. “It seemed to me they were promoting a lot of fear.” After giving the procedure some thought, she nixed the idea, in no small measure because it would cost about $2,000. “I thought the chance of one of my kids coming down with one of these diseases was so remote,” she says.

 

The first private cord blood bank was established in 1993. There are now some 24 private cord blood banks and another 50 public banks across the United States. Umbilical cord blood represents a rich source of hematopoietic stem and progenitor cells that are capable of producing the various types of cells that make up the blood and immune system. Cord blood banks note that as many as 70 diseases have been treated to date with stem cells derived from cord blood. The list includes blood cancers such as leukemias and lymphomas, blood disorders such as sickle-cell anemia and Thalassemia, metabolic disorders such as Hurler syndrome, immunodeficiencies such as severe combined immune deficiency (SCID), and other diseases.

 

Private cord blood banks are also quick to assert that there’s hope that these same cells in the future could be used to treat some of society’s most troubling maladies, including diabetes, spinal cord injury, heart attack, stroke, Alzheimer’s disease, Lou Gehrig’s disease, breast cancer, multiple sclerosis and Parkinson’s disease. That may be true, but for now that’s hope ahead of the science.

 

Currently, parents interested in banking their newborn’s cord blood essentially have two options. They can go to a private bank, which typically charges around $2,000 for initial collection fees. Then there’s storage in deep freeze, which can run more than $100 a year. The cord blood collected by these banks remains for the personal use of the family members who paid for the service.

 

Meanwhile, public banks don’t charge for collection or storage. But the hitch is that the donor has no claim to the cord blood in the future. Anyone in need of cord blood for a treatment can use a public bank to try to find an appropriate match.

 

Cord blood treatments carry several risks. There’s a potentially deadly graft-versus-host disease that can strike after the transplantation of cord blood as the recipient’s immune system attacks the donated material. As a result, donors need to be matched. Although it is unlikely that any two strangers would be a match, there is a one in four chance of siblings being compatible.

 

One problem critics have with the private banks, though, is that many of the diseases for which cord blood carries the promise of a cure are genetic. If the cord blood contains the genetic defects for a disease from which the child suffers, transplanting those defective cells back into the child will likely give rise to the same disease that it aims to cure. For this reason, most cases of successful cord blood transplantation involve sibling donors.

 

There are instances where doctors have had success transplanting a child’s own cells for such diseases. In one case, doctors at City of Hope Hospital in Duarte, California, could not find a matched donor for a child with aplastic anemia—a failure of the bone marrow to produce blood cells. As a last resort, in 2006 they transplanted her own cord blood cells, which had been banked six years earlier. She is now considered cured.

 

The medical establishment remains skeptical of private cord blood banking. In January in a policy statement, the American Academy of Pediatrics weighed in on the question of whether or not to bank cord blood in a policy statement. The AAP panel concluded that private cord blood banking should not be recommended except in cases where a full sibling is suffering from a malignancy or genetic disorder that could potentially benefit from a cord blood transplant. It said that “private storage of cord blood as ‘biological insurance’ should be discouraged.”

 

“The current applications are very minimal for private banking,” says Bertram Lubin, president of Children’s Hospital Oakland Research Center, who co-chaired the AAP committee. “Future applications are speculative, in my opinion, but the potential for tissue repair and regeneration exists. There just isn’t scientific data.”

 

The private cord blood banking industry believes detractors are missing the point. The AAP guidelines are seriously flawed, says Steve Grant, co-founder and executive vice president of Cord Blood Registry, the largest private cord blood bank. It’s wrong, he contends, to think only in terms of what is currently known about the benefits when the whole point of banking cord blood is the potential of what it could mean to someone years from now. He points to the City of Hope Hospital patient who was cured with her own cord blood. If her parents had followed the AAP guidelines, they might not have their child today, he says.

 

“Most medicine is approached as informed choice and informed consent as a physician explains the risk and benefits of a procedure,” says Grant. “In this case, the risk is just financial and the benefits are cure or life-saving treatments.” Grant adds that the AAP policy doesn’t provide “fair and balanced information” about the risks and benefits of cord blood banking. The policy “comes across as very biased and not in the best interest of empowering a patient to make an informed decision,” he says.

 

One parent who initially saw potential benefits is Sarah Lawrence, who runs an office and housecleaning service in Oakland, California. At the urging of her mother, she started looking into cord blood banking when she was pregnant with her first child. Making the decision easier was the fact that her mother had offered to pay for the initial fees to collect and store the cord blood. As Lawrence learned more, the service seemed to carry enough promise, particularly when she considered the range of diseases that in the future might be treated with the cells. “That was a big selling point,” she says.

 

In the end, though, despite the therapeutic promise of cord blood banking, she says she did it because her mom had offered to foot the bill. When her second child was born, she decided against repeating the procedure at her own expense. “I think it could all be just a big ol’ crock, but my mom was willing to do it and it gave her emotional security,” says Lawrence. “If I were paying for it myself, I probably wouldn’t have done it.”

 

Indeed, cost remains a barrier for many people who read the marketing material and feel they are somehow failing their children before they are even born because they can’t afford the service. Some doctors say they get calls from guilt-ridden mothers-to-be who are sold on private cord blood banking, but are distraught because they can’t afford to pay for it. Perhaps the best advice to offer them as one critic suggests is that if they’re concerned about the future health and safety of their children, they should invest in a good car seat.

A companion photo essay can be viewed here.