Cord Blood: To bank or not to bank?
Sue and I have been discussing cord blood lately.
The reason this is such a hard decision for us is because of the "you don't know what you don't know" factor. If we were to just consider the value of cord blood banking today, I would probably say "no" to it -- at least to private banking.
There are basically three options:
- Do nothing with the cord post-birth
- Bank it to a public bank for others to benefit from it (typically free)
- Bank it to a private bank for our child's possible use later in life (typically about $2k up front and $150 per year)
However, what will the next 100 years of medical innovation look like? Stem cells are already valuable in medicine, and considering how flexible they are in transforming into any type of cell in the body, I don't expect their value to decrease over the lifetime of our child, and I wouldn't be surprised if they become the building blocks of personalized medicine and lifesaving cures in the future. And there's only one opportunity -- at the child's birth -- to make this decision. You can't go back and re-do it later.
And then there are the touchy-feely articles like these:
"Amanda was diagnosed with leukemia and given two weeks to live when she was 23, but her doctor at Baylor found cord blood that was a 99% match. The cord blood cured her leukemia and a blood disorder that had required daily shots since childhood."
That child was able to use cord blood from a public bank.
So I look at banking stem cells from cord blood like insurance: We hope our child never has to use them, but if she does, they might make a tremendous impact in the outcome.
We're leaning towards private banking, but we haven't made a final decision yet. I'd love to hear opinions from anyone who has gone through the process (either private or public banking).
The biggest private cord bank company is CBR, the "Cord Blood Registry", but they have some very negative Yelp reviews. One reviewer wrote:
"Beware! Be very careful about signing up with any private cord blood bank, but especially this one! I am an ultrasonographer and have worked in high-risk OB for over 20 years. When I first became pregnant 12 years ago, I did a lot of research about the future benefits of saving your baby's stem cells, and there are many and that will only increase in the future. However... my kids are now healthy 11 and 9 year olds and we decided that the extra $200.00 a year was an unnecessary expense. I called the company and told them I wanted to terminate the contract. I asked what happens to the cells, can I donate them to a public bank? etc. GUESS WHAT? you sign all rights to your own children's DNA over to them, unless you want to pay the $2000.00 fee to have them send the cells to a 3rd party (not even to yourself) and have them destroyed."
That got me looking around at other options.
One reviewer mentioned StemCyte. There are a few things I really like about their approach, one of which is their public + private focus: They serve as both a public cord bank, as well as being a private one.
This means that although they are newer to private cord blood banking (they started doing private banking in 2004, but have been a public cord bank since 1992), they've had over 315 transplant centers using their units:
They also make other claims that are harder to verify -- at least for me as a non-medical professional. For example, this quote:
"StemCyte’s high engraftment rate is the result of our proprietary, modified whole blood processing (5 patents pending). This method consistently delivers an unexcelled post-processing cell yield and post-thaw cell recovery of 99.9%. StemCyte has a processing method that has the highest cell recovery and our transplant experience of over 1700 is a strong measure of that quality.
One reviewer on BabyCenter wrote:
"After doing my own research, StemCyte is the best in research and even has a public bank (with more rigorous requirements and accreditations).They have the highest Cell Recovery Rate.They offer a $50K lifesaver guarantee meaning they'll give you $50K PLUS refund all service fees paid PLUS find replacement sample from their public bank if your baby rejects his/her own cord blood. StemCyte works with over 130 leading transplant cenrs [sic] worldwide."
Are those a real differentiators? Hard to know. I wish the cord registries were better reviewed by independent sources like Consumer Reports. The only guidance from CR was this article in 2009 in which the author decided against private cord blood banking. She wrote:
"Surveys went to 152 doctors in the United States and Canada, and 93 responded. Out of the thousands of stem-cell transplants these doctors had performed, only 50 had involved privately-banked cord blood. Forty-one of these cases were "allogeneic" transplants, in which blood from one individual was used to treat another member of the family. And in 36 of these cases, families already knew of a member who was a candidate for a transplant before banking the blood. The researchers found only a few cases where cord-blood banked "just in case" had been used. They also found only nine "autologous" cases, in which children had transplants using their own stem cells. This, say researchers, is in contrast to the main marketing message of private banks, which promote the idea of children using cells from their own cord blood. (Doctors, in fact, won't use a child's own stem cells for some illnesses, as this could reintroduce the illness into the child's body.)"
I'd love to hear thoughts from anyone who is going through this process, or has gone through it in the past.