What parents should know about cord blood banking

Pregnant women are bombarded with advertisements — on social media, in childbirth classes, even in their doctors’ offices — urging them to bank the blood in their baby’s umbilical cord and gain “peace of mind.”

Private banks claim that the stem cells inside the blood are a powerful tool to have on hand in case a child one day becomes seriously ill. They charge several thousand dollars upfront for storage plus hundreds more every year thereafter.

But an investigation by The New York Times found that leading banks have consistently misled parents about the technology’s promise. The few parents who try to withdraw samples often find that they are unusable — either because their volume is too low or they have been contaminated with microbes.

Here’s what parents should know about cord blood banking.

Use of cord blood is declining

In the 1990s, transplant doctors saw cord blood as a promising new source of stem cells for patients with sickle cell anemia and leukemia who could not find suitable matches from their families or bone marrow donor registries.

The major cord blood banks — Cord Blood Registry, ViaCord and Cryo-Cell — told the Times that the cells they store had saved children’s lives and that no one knew what scientists may one day discover.

“We believe in the future of cord blood,” said David Portnoy, the chief executive of Cryo-Cell. Chet Murray, a spokesperson for Revvity, which owns ViaCord, said, “The potential for future scientific advances in addition to the current clinical uses is enormous.” A representative from CooperSurgical, which owns Cord Blood Registry or CBR, pointed to customer testimonials.

But much of that excitement among transplant doctors and oncologists faded after new medical advancements made it easier to transplant unmatched adult stem cells. Cord blood transplants have declined every year since 2014, according to data from NMDP, a nonprofit organization that coordinates stem cell donations.

“There has been a trend away from cord blood,” said Dr. Mary Horowitz, deputy director of the cancer center at the Medical College of Wisconsin. “It’s actually a happy story,” she added. “We now have many options.”

Beware of overblown marketing

The Times investigation found that cord blood banks often make misleading scientific claims.

For example, banks often say that a newborn’s cord blood will be a “100% match” for that child. That is true, but it ignores crucial context: Perfectly matched cord blood is often a problem. If a child developed leukemia, for example, her own stem cells would be useless because they are genetically predisposed to become cancerous.

For some diseases, such as lymphoma, doctors do use a patient’s own stem cells for treatment. But they can almost always get stem cells directly from the patient’s blood.

CBR, ViaCord and Cryo-Cell say that cord blood can be used to treat 80 conditions. But that figure refers to mostly rare blood and immune disorders.

These companies also claim that 1 in 217 people will need a stem cell transplant by the time they turn 70, citing a paper published in 2008. But Horowitz, the author of that study, said that the calculation was based on stem cells from all sources, including blood and bone marrow. “It’s misleading,” she said.

Most treatments using privately banked cord blood are experimental

Researchers continue to explore new uses for cord blood in clinical trials.

The most favorable trial infused cord blood into dozens of children with cerebral palsy, which can cause muscle weakness and an unsteady gait. A year after treatment, children saw some improvements in their motor function.

Those researchers still offer the experimental treatment. But this year, they have had to turn away more than half the families who applied to get it because the samples stored in private banks were either too small or contaminated with microbes, according to Dr. Joanne Kurtzberg, who led the study.

Cord blood banks often trumpet cord blood’s ability to treat conditions that have been neglected by researchers. The three largest banks all point to hearing loss, for example, as a promising area. But those claims appear to be based on a 2018 study that involved 11 children.

Murray, the Viacord representative, said that “research into innovative treatments is ongoing and in various stages.”

Even if a parent has paid to store cord blood, transplant doctors often choose not to use it

Parents sometimes ask Dr. Jan Boelens, a pediatric oncologist at Memorial-Sloan Kettering, if their child can be treated with the cord blood they’ve paid for years to store.

The answer is usually no. Samples from private banks often don’t have enough stem cells to be medically useful. “It’s never enough,” Boelens said.

Boelens said that he had worked with privately banked cord blood about 15 times, usually in cases in which families banked a second child’s cord blood with the hope of treating an older sibling. But in all of those cases, he said, he still had to retrieve bone marrow from the younger child because the cord blood did not have enough cells.

A half-dozen transplant doctors told the Times that there was little use in paying to store cord blood. Children who need stem cell transplants typically have no trouble finding donor cells, either from a family member or the country’s network of public banks that store cord blood from anonymous donors.

“The potential, actual, legitimate uses of a privately banked cord blood unit are almost nonexistent,” said Dr. Jonathan Gutman, an oncologist at UCHealth University of Colorado Hospital who specializes in cord blood.

Some parents who have withdrawn cells have discovered they were contaminated with microbes

Customers of ViaCord and Cord Blood Registry told the Times that when they tried to withdraw cord blood to join a clinical trial, the cells were unusable. And earlier this year, inspectors from the Food and Drug Administration visited CBR’s storage facility in Tucson, Arizona, and found five violations of quality standards, including leaky storage bags and a sterility test that was not catching bacterial growth.

One customer, Renee Johnson, received a letter after she banked with ViaCord in 2014 that seemed to imply all had gone well with her cord blood’s storage. “Congratulations!” the email began. “Your baby’s cord blood and tissue have been processed, tested, frozen, and secured in our storage vault.”

When she tried to use the cells two years later, she learned the sample had tested positive for E. coli within weeks of arriving at the bank.

Johnson now recommends in Facebook groups about stem cells that parents who bank cord blood proactively request that type of information. Customers can request their sample’s “sterility report.” If the report says the sample has “positive” sterility, that means that the cord blood bank has detected contamination.

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