What parents need to know about cord blood banking

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

Private banks say that blood stem cells are a powerful tool to have on hand if a child becomes seriously ill one day. They charge a few thousand dollars up front for storage, then hundreds more each year.

But an investigation by The Fresh York Times found that leading banks have consistently misled parents about the promises of the technology. The few parents who try to collect samples often find they are useless—either because the volume is too petite or because they have been contaminated with microbes.

Here’s what parents need to know about cord blood banking.

Cord blood is often touted as an emerging medical technology. In reality, its exploit is degenerating.

In the 1990s, transplant doctors saw cord blood as a promising up-to-date source of stem cells for patients with sickle cell anemia and leukemia who could not find matching donors among their families or through bone marrow donor registries.

The largest cord blood banks — Cord Blood Registry, ViaCord and Cryo-Cell — told The Times that the cells they store have saved the lives of babies and that no one knows what scientists will one day discover.

“We believe in the future of cord blood,” said David Portnoy, CEO of Cryo-Cell. Chet Murray, a spokesman for Revvity, owner of ViaCord, said, “The potential for future scientific advances beyond current clinical applications is enormous.” A representative from CooperSurgical, owner of the Cord Blood Registry, or CBR, pointed to a customer reference.

But much of that enthusiasm among transplant doctors and oncologists has waned as up-to-date medical advances have made it easier to transplant mismatched adult stem cells. Cord-blood transplants have declined every year since 2014, according to NMDP, a nonprofit that coordinates stem-cell donations.

“There’s been a trend away from cord blood,” said Dr. Mary Horowitz, associate director of the cancer center at the Medical College of Wisconsin. “It’s actually a joyful story,” she added. “Now we have a lot of options.”

Beware of excessive marketing.

An investigation by The Times has found that cord blood banks often provide misleading scientific information.

For example, banks often say that a newborn’s cord blood will be a “100 percent match” to that baby. That’s true, but it ignores key context: perfectly matched cord blood is often the problem. If a baby were to develop leukemia, for example, its own stem cells would be useless because they are genetically predisposed to becoming cancerous.

For some diseases, such as lymphoma, doctors exploit a patient’s own stem cells to treat them. However, they can almost always obtain stem cells directly from a patient’s blood.

CBR, ByCord AND Cryocell they say that cord blood can be used to treat 80 diseases. But this number mainly refers to occasional diseases of the blood and immune system.

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

Most procedures using cord blood stored in private banks are experimental.

Scientists continue to explore up-to-date uses for cord blood in clinical trials.

The most beneficial study involved injecting cord blood into dozens of children with cerebral palsy, which can cause muscle weakness and an unsteady gait. A year after treatment, the children saw some improvement in motor function.

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

Cord blood banks often boast about cord blood’s ability to treat conditions that have been neglected by researchers. Three The biggest banks all point to hearing loss, for example, as a promising area. But those claims appear to be based on a 2018 study. in which 11 children participated.

Mr Murray, of Viacord, said that “research into creative treatments is ongoing and at various stages.”

Even if a parent has paid to store cord blood, transplant doctors often decide not to exploit it.

Parents sometimes ask Dr. Jan Boelens, a pediatric oncologist at Memorial-Sloan Kettering Hospital, whether their child can be treated with cord blood they have paid years to store.

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

Dr. Boelens said he has worked with privately banked cord blood about 15 times, usually in cases where families were banking the cord blood of a second child with the hope of treating an older sibling. But in all of those cases, he said, he still had to take bone marrow from the younger child because the cord blood did not contain enough cells.

Half a dozen transplant doctors told The Times that it makes no sense to pay to store cord blood. Children who need a stem cell transplant usually have no problem finding donor cells, either from a family member or from a national network of public banks that store cord blood from anonymous donors.

“The potential, real-world, legal uses for a privately stored unit of cord blood are virtually nonexistent,” said Dr. Jonathan Gutman, a pediatric oncologist at the University of Colorado Medical Center who specializes in cord blood.

Some of the parents whose cells were collected were found to be infected with microorganisms.

ViaCord and Cord Blood Registry customers told The Times that when they tried to collect cord blood to participate in a clinical trial, the cells were unusable. Earlier this year, Food and Drug Administration inspectors visited CBR’s Tucson, Arizona, warehouse and found five quality-standards violations, including leaking storage bags and a sterility test that failed to detect bacterial growth.

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

When she tried to exploit the cells two years later, she learned that the sample had tested positive for E. coli just weeks after it was banked.

Ms. Johnson now recommends in stem cell Facebook groups that parents who store cord blood actively ask for this information. Customers can ask for a “sterility report” on their sample. If the report says the sample is “sterile” positive, it means the cord blood bank has detected contamination.

ViaCord’s Mr. Murray said the company’s current policy is to notify customers if samples are contaminated. He also said research is ongoing into how to decontaminate cells.