How Much Is It to Save Your Baby Cord Blood
Should You Bank Your Baby's Cord Blood?
The stem cells in this vital fluid could save someone's life, but it probably won't be your child's.
To bank or not to bank — that is the question I found myself reckoning with around six months into my pregnancy, when advertisements for private cord blood banks seemed to be popping up everywhere. "Protect what matters most," a poster in my obstetrician's office said. "Build your family a healthy future," an ad on my Instagram feed prompted.
At the time, I had no idea what cord blood was, or why I'd want to pay some company hundreds of dollars per year to hold onto it. But didn't I want to protect my family? I was forced to pay attention.
Cord blood, I learned, is the stem-cell-rich blood that flows through the umbilical cord and the placenta when your baby is in the womb. When providers cut and clamp the umbilical cord after delivery, they can collect the remaining blood and send it to a bank where it's plunged into a deep freeze. But while the Food and Drug Administration has approved cord blood from a donor to treat a variety of blood and immune system disorders like leukemia, lymphoma and sickle cell disease, some private cord blood companies are advertising this valuable fluid as a blanket biological insurance policy against a host of other conditions, including autism, cerebral palsy, Alzheimer's and more.
The only problem: It's not approved to treat any of these ailments.
"These are really cool cells and they have a lot of potential properties," said Paul Knoepfler, a stem cell biologist at the University of California, Davis. But before positioning them as a treatment for anything beyond blood diseases, researchers need to prove that they are safe and effective. "And that hasn't been done," he said.
Why cord blood is so special
Swirling around cord blood are millions of special kinds of blood stem cells known as hematopoietic stem cells, which can develop into any type of blood cell in the human body. On a given day, the stem cells in your bone marrow make billions of new red and white blood cells to replenish old ones that have died. But if they make mistakes, the result can be serious, even fatal. Leukemia, for instance, results when the body produces too many abnormal white blood cells, which can crowd out healthy ones.
Before the 1980s, the only way to get a blood stem cell transplant for a disease like leukemia was to use bone marrow from a donor. But that can be a long and challenging process (bone marrow is not collected until you find a perfect match) and can come with serious risks for the recipient (and sometimes for the donor). Cord blood transplants, which come from your own cord blood or a donor's and which are administered similar to a blood transfusion, proved to be faster (cord blood has already been collected and can be administered right away), less risky and in many cases, just as useful. They also became a boon for people of color, since bone marrow registries in the United States tend not to be racially and ethnically diverse, and cord blood doesn't require as exact a match as bone marrow.
How banking works
After collection, your baby's cord blood is shipped to either a public or a private blood bank, depending on which you choose.
Public cord blood donations cost the donor nothing and are made available to anyone (including scientists) through a national registry. With public banking, however, you can't always ask for your own baby's cord blood back if a family member needs it.
Private banking, on the other hand, costs money but is held for your baby or another family member (most likely a sibling) when or if they may need it. Banks typically charge an initial collection fee of $1,000 to $2,000 per birth, followed by about $150 to $200 per year (storage costs can vary from bank to bank). Insurance doesn't cover private banking, but some cord blood banks offer financial help for families with immediate relatives who have a known blood disorder and would benefit from a stem cell transplant.
It's important to know that if your baby has a genetic blood disorder, like sickle cell anemia, her own cord blood probably won't be helpful in treating her condition because her blood will contain the same genetic defect that is making her sick (this is also true of bone marrow transplants). In such a case, she would likely need cord blood from another healthy donor, like a sibling.
In theory, your baby's banked blood can be preserved indefinitely. But because public cord blood banks have only been around for about 30 years, it's hard to know for certain how long frozen cord blood remains viable.
The controversy over private banking
Though public and private banks provide a similar service — the ability to store cord blood — their methods and standards can differ substantially.
The F.D.A. considers publicly banked cord blood a "drug" and a "biological product" that is subject to strict requirements and regulations. Public banks must meet high sterility standards, and the blood must be disease- and contamination-free and have a minimum number of cells before it is banked.
Private banks, on the other hand, don't always meet the same quality or viability standards, and generally don't impose a lower limit on the number of cells that must be collected. This means there is not always a guarantee that the banked blood will contain enough stem cells for a successful transplant. One limited study published in 2010 found that fewer than half of privately banked units in the United States met the F.D.A.'s criteria, with public banks faring better.
Private banks are also for-profit companies. In some cases, their marketing advertises cord blood as a therapy for conditions like autism or cerebral palsy, when in fact such treatments have not been proven to work, said Alan Leahigh, chief executive officer of the Cord Blood Association, a nonprofit that supports cord blood banking, research and awareness.
ViaCord, one of the nation's largest private banks, states on its website that "special properties of cord blood stem cells" may help those with autism, in part by encouraging their brain cells to repair and by boosting their immune system. As evidence for that claim, they reference a 2017 clinical trial of 25 children with autism who were given cord blood transfusions.
The trial did suggest that the therapy might be safe. But it was not designed to determine whether it worked, said Dr. Joanne Kurtzberg, a pediatric hematologist-oncologist at Duke University Medical Center and president of the Cord Blood Association, who led the trial.
Dr. Kurtzberg has also led two subsequent Phase 2 clinical trials — one on the efficacy of cord blood transfusions as a treatment for autism, and another on cerebral palsy. In both cases, while the results have been encouraging, they are still preliminary; it would take larger, Phase 3 trials in more patients to prove that a treatment is truly safe and effective.
"I think that some of the companies you're referring to leverage and take advantage of our studies in a way that is premature," Dr. Kurtzberg said about private cord blood banks.
Some private cord blood banks are also floating vague possibilities of regenerative stem cell medicine as a cure for heart disease, Alzheimer's, diabetes and other conditions. Not one of these therapies has made it past a Phase 2 trial, or is approved by the F.D.A.
Morey Kraus, chief scientific officer at ViaCord, said that he understands that more research on cord blood is needed for use in unapproved conditions, but that even if the research doesn't pan out, parents will have been glad they had the option of banking and trying it as a therapy.
Not everyone agrees: "The data suggest there might be a little help there, but I find it not at all convincing," said Dr. Steven Joffe, a pediatric oncologist and bioethicist at the University of Pennsylvania Perelman School of Medicine. The cost of private banking "would be hard to justify at this point," he said, unless someone in the family has a known blood disorder that might require a stem cell transplant.
According to Dr. Knoepfler, cord blood stem cells should not be thought of as "some kind of panacea" for all diseases. "People are in desperate situations," he said, "they're looking for hope, and giving them false hope has definite downsides."
A difficult choice
At the end of the day, is it worth it to bank your baby's cord blood? As with many medical matters, the answer is complicated.
The American Academy of Pediatrics and The American College of Obstetricians and Gynecologists say that there's not enough evidence to recommend routine private cord blood banking, except in unique circumstances: If a first- or second-degree relative is in need of a stem cell transplant (because of a blood disorder like leukemia) or if someone in your family has a known genetic disorder, like sickle cell disease.
But even in those instances, private banking is still a gamble: There's not always a guarantee that your banked blood will contain enough stem cells to be usable. And if that same genetic condition happened to be passed on to your baby, the stem cells would be unusable, a fact which private banks do not always make clear.
If your family doesn't have a genetic disease or blood disorder, the odds of using your baby's own blood are vanishingly small — especially if you're saving it just for your baby. According to data posted on the website of Cryo-Cell, one of the country's oldest and largest private banks, most units they release go to clinical trials or family members of the newborn. They are almost never used to treat a blood disorder in the child itself.
The A.A.P. and ACOG, however, encourage families to consider public banking — not because it might benefit them specifically, but because it might be a lifesaver for someone else.
How to decide
Whether you ultimately choose to bank your baby's cord blood, it's best to start thinking about it during your second trimester, so that you have enough time to ask yourself the relevant questions and discuss them with your family and provider. Is there a good chance that someone in your immediate family will need a stem cell transplant? Is it important to you to donate cord blood? Is your hospital set up to accept donations? Are you willing to pay for a service your baby or family may never use?
If you decide to bank privately, notify your bank of choice so that they can mail you a kit. It usually takes a few days, but most private banks will also rush a collection kit or deliver it directly to the hospital if you make a last-minute decision.
If you decide to go public, donating cord blood costs nothing and requires minimal planning. You'll still need to make sure that your hospital of choice is set up to accept public donations — there are currently 16 public cord blood banks in the United States, and about 147 hospitals that can accept public donations.
Either way, it's a personal decision, and what works for someone else's family may not be right for yours. "I do not think a family should ever feel like it's imperative to bank their kid's cord blood, like if they don't, they've denied their child access to some lifesaving therapy," said Dr. Kurtzberg.
If you have the financial means and understand the cells may never be useful for anything, she said, then go ahead. Or else, donate them to a public bank where they're much more likely to save someone's life.
Dana Najjar is a journalist and software developer living in Brooklyn.
How Much Is It to Save Your Baby Cord Blood
Source: https://www.nytimes.com/2020/12/18/parenting/pregnancy/cord-blood-banking.html