Sunday, April 27, 2008

Detailed Responses: Against Private Cord Blood Banking

Since the GGMG moms were kind enough to respond in detail to my inquiry for advice around whether to cord blood bank or not, I thought I store their individual responses here. I received 4 responses out of 13 that were against it.

Response 1:
1. Did you do cord blood banking? why? or why not?
First of all, at 2 weeks out, you're late in the game.

I didn't do it because whatever disease affects your baby god forbid is almost certainly going to taint the cord blood as well. So it's really only useful if you bank healthy blood for a subsequent child who gets ill. Therefore odds are very slim, and you are paying a lot.

Also, what my midwife told me is that a lot of cord blood is lost in storage, and useless. This they do not tell you. So you pay a lot of money, and then find out that you can't use it.

Third, I didn't do it because I smell too much of a marketing scam around it. It's promoted so much I just mistrust it.

What you should do and what i wish I had done is donate it to a public cord bank for free. Should your current child become ill, he/she would have to turn to public storage, which is why it benefits everyone to donate publicly. Ask your doctor about that immediately, as you need about 6 weeks leadtime.

2. Today, are you happy with the decision you made about cord blood banking? why or why not?
Yes. I am so glad I didn't waste the money.

4. Some people say cord blood banking can not only help the baby but maybe also family members if the blood matches. is this true?
Yes, it's more likely to help family than the child him/herself.

Response 2
My stepdad just died of leukemia so I was originally very interested in the issues around cord blood banking and doing banking if it was right for me, no matter what the cost. Also my stepdad did a bunch or research with me before he died while he was still well which I so appreciated. It is pretty expensive even with the "coupons" that are always floating around. And you have to pay not just for gathering it but also for storing it as time goes on. But I thought if it could potentially help my son in the future or even if it could potentially help another child that would be worth doing it.

I decided against doing it though after looking into it because the pros did not outweigh the cons even putting aside the high price. The reason not to do it is it is very good to wait to cut the cord a few minutes after birth (a beautful moment to hold your baby while he or she is still attached to you) while that special cord blood drains into the baby. It is full of nutrients and antibodies and all this
really good stuff that will definitely be useful for your baby at that moment (you can look up exactly all the things, I cant remember all of them but they are all really good and only available right at birth).
The baby is so new so it can use all the advantages it can get right there at the beginning. So the cord blood goes into the baby and then after a few minutes they cut the cord. I definitely suggest going over with your doula/midwives/OB/birthplan/etc at what pt they cut the cord because you want that blood. Midwives are more into waiting a few more minutes than some OBs I have heard who just cut it. Also if you wait to let the blood drain into the baby the cord falls off quicker my midwives told us, not that makes a huge difference but just another thing.

If you do cord blood banking there is a kit the company sends the hospital and a high priority at the birth is given to cutting the cord as quickly as is possible. It is a more elaborate procedure than
regular cord cutting too so the nurses are gathered around attending to that and making sure to get the blood out ASAP. This is going to be a part of your birth experience, it is not something that just
seamlessly happens if you have this done. And it is not at all clear that the blood is helpful once banked to be used in the potential future. At MD Anderson cancer hospital for example it is not used. The cord blood companies say it can be used for medical reasons but it absolutely is still in research and there are no current diseases where it is definitvely useful. Everyone is hoping that soon in the future it will be useful esp in leukemia patients it is not useful currently. Like it might be good to have your own blood if you get leukemia in the future but the chances of that are pretty low that any individual is going to get one of the diseases it is good for. More likely would be that if the info was charted like a good blood bank, matches could be found nationally. Unfortunately the blood banking has a business model in which the service is sold more for individuals and detailed med info on each banker is not gathered on a national basis and so even the current stock of banked cord blood is of very limited use. So there you go. If I had another child in another few
years I might call up MD Anderson and do more internet research etc in case some of the pros have improved and maybe do it if it seems more worthwhile.

Response 3

I am a genetic counselor and I did NOT bank our baby's blood (he was born last month). My reasons were that last I checked, only about 1/1800 samples were ever used, and the majority of those were for families with a prior known genetic condition. Also, I think the rates are outrageous. You can bank regular blood for 20 years for a flat fee of $75 (for example, at Prevention Genetics), yet these companies (Viacord, etc) charge in excess of $1500, PLUS an annual maintenance fee of $150 or so. You can call the companies to update this data because it's been about 2 years since I talked to them about it. Regarding the possibility of use for adult-onset conditions such as spinal cord injuries or Alzheimers, my best guess is that by IF AND WHEN technology progresses to the point where we can use stem cells to treat these conditions, we would have ALSO have perfected how to extract stem cells from other sources (such as regular blood). Basically, I think if the companies were charging a more reasonable rate, I MIGHT think about it.. But I resent the fact that they are exploiting parental fears to make these huge profits with no justification. Plus - what is your guarantee that they would even be in business in 20 years?

Good luck with your decision. If you have the money laying around, there's no harm. Again, I just chose not to because I resent the exploitative cost.

Response 4
Both the American Academy of Pediatrics and American College of Gynecologists recommend against cord blood banking for many reasons. I asked at least 15 GYNs about it, and could not find one that advised for it. In fact one said take the money and put it in the college fund instead. I believe this has been posted in the archives as well.

- Lei

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