Detailed Responses: Pro 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 9 responses out of 13 that were in favor of doing private cord blood banking.

Response 1. We did decide to bank our baby's cord blood. We did some research and went with Cord Blood Registry--mostly on the advice of our OB who said that they are the most established and trustworthy. We did consider that we may be wasting the money on some kind of racket but the more I read (and have read since) the more I am relieved that we managed to scrape the money together for the down payment.

Response 2.
Here is a recent true story of how cord blood helped this little boy and there are many more out there

http://www.msnbc.msn.com/id/23572206/

We did cord blood for our son. One reason is because I am asian and my husband is caucasian and if something were to happen to our son and they needed a match we would be his best bet as it's hard to find donors of mixed race.

Yes, I am happy with it. It's like buying insurance. Chances are you'll never need to use it, but in case you do I woulnd't have any regrets of not banking.

After research and talking with other mothers I choose cord blood Cord Blood Registry, 1200 Bayhill Drive, San Bruno, CA 888-261-4811 I was also told that if a member in your family needs it that it could help them.

As far as research you can just google 'cord blood' and you will get a plethora of information. I also called and spoke to them and asked specific questions like how long can they keep the cord blood for etc. The people at Cord Blood Registry are very informative and helpful. Not pushy at all.

Response 3
We did decide to do the cord blood. Our OB said it was like an expensive insurance policy you hope to never have to use. I felt like I had done too much reseach to not do it. We went with the Cord Blood Registry www.cordblood.com You can ask for George 1-800-588-6377 he was great in getting us all the info etc. CPMC was very open to doing it. I just brought the kit with us. They did some initial stuff when I was admitted and then my OB got the cord blood right after my daughter was born. In fact she did over an beyond what we needed so we have millions of cord blood cells stored. Yes it can help your baby, you your husband etc. Again I hope I never have to use it but am glad we did it. Feel free to contact me with any questions. If you call George just tell him that I sent you. He is great!

Response 4
A lot of evidence suggests that if your baby has something wrong that cord blood would help, he or she would not be able to use their own cord blood, as physicians think there might be diseased cells in there as well. That being said, you could use cord blood from a sibling or cousin, so if you're planning on having more kids, it's a good idea for that reason. Basically we see it as an insurance policy. If we never need it: great! If we do need it: we'll be really glad we did it. We use Family Cord Blood services, because at the time we did it, it was the least expensive of the reputable cord blood banks. I'm sure we could get you a discount certificate if you decide (after researching) to go with them.

Response 5
There is a website that I think is called parentsguidetocordblooddonation.org that might help you. My husband and I are both doctors, and this is our take: - there's not a lot of hard evidence that it has lots of uses - it could be useful for the baby, mother, and (maybe) siblings, less likely father. - think about your specific case: for instance, if you or your husband is adopted and don't have knowledge or access to birth relatives. In our case, we have an unusual genetic combination, which would make it hard for our son to have bone marrow or tisue matches from the the general population (God forbid), so we've elected to do it for both of our children. There are a lot of strong, politicised opinions around private cord blood banking. I would encourage you to filter out the noise and focus on what is best for you and your family.

Response 6
1. We did not bank our first daughter's cord blood but did do our second's. The reason being during my first pregnancy there was not much info around about it (we were living in another country) and here there was so much info I thought of it as an insurance policy. And a big one, we could afford it - it is expensive if money is tight.
2. Yes as I just see it as an insurance policy that we hopefully never need. I do feel a little guilty that I did not bank it for public use and am saving it for my family.
3. We went with CBR. They have been fantastic. I mainly went with them as I got a discount coupon from a GGMG mother and all my research suggested that they are all fairly similar. The customer service I have received to date has been fantastic.
4. We did it this time after speaking with CBR and they sent me info that the blood can generally be a match for siblings (not always) but we wanted to make sure our first child could potentially also benefit in need. If you call them, they will send you some info.
5. Google CBR, they are great. If I happen to get any discount vouchers in the next week or so, I will email you. Make sure you get a kit for whoever/if you choose from your OBGYN soon as you will need this to take to the hospital.

Response 7
I did cord blood banking for my second child and wish I had done it for my first. I went through CBR (Cord Blood Registry) and found them to be very professional, attentive, and kind. In researching companies, they had the largest customer base and a solid business model (you don't want to choose someone who will go out of business!). My reasons for banking my baby's cord blood were several. My daughter was diagnosed in utero with a congenital heart defect so I felt that any additional means of help we could give her would be so important. Also, I believe that we are on the cusp of many exciting advancements in biotechnology and keeping something like her cord blood could lead to improvements in her health many years from now. It is true that her cord blood could help other family members. As I recall, there is a 100% chance it could be used for me, and a 50% chance that it can be used for my son. Lastly, we do so much to take care of our kids health-isn't this a relatively inexpensive insurance plan that we could get great benefit from it in the future? I would kick myself if I didn't bank it and later found out she needed it. I would advise you to look at the CBR website and they can tell you specifically about its uses. Interestingly, my father, who is in biotechnology, was so impressed and adamant about the need to bank the baby's cord blood that he recently gave this as a gift to my sister on the birth of her first baby.

Response 8

I banked both my girls cord blood with CBR and everything worked out great (even though the decision with my first was kind of last-minute like yours... my ob had the kit in the office and even cpmc has cbr-kits handy, in case you REALLY decide last minute...

I was hesitating as well, of course, because there are lots of people, and also doctors, that say it's useless. But my ob did it for her own son and that made me think. I'm an insurance-person, I just like to be prepared, even for the unlikliest event and I am luckily in the position that I can afford banking my kids' blood. That's why I did it. If you don't do it, please consider donating the cord blood.

I did some research at that time and found out that most moms go with CBR or viacord. I decided to do CBR because 1) my ob went with them and 2) because CBR only does banking, nothing else. It's very unlikely that they go broke.

I've read that your baby's cord blood might be able to help a sibling (if existing) or another family member. There are some great success stories about this (I read it in the CBR newsletters that I receive periodically).

I have a discount coupon for 250$ off which I will forward to you. I don't know how much the total is right now, you will have to check on their website. But if you refer other people you get one year of free storage and that saves you some money. I'm not sure if viacord for example has such a system.

Response 9
Unfortunately, I did not bank my son or daughters cord blood but in retrospect I definitely would. I was recently diagnosed with a bone marrow disorder and now realize the importance of this for treating bone marrow disease, especially if a bone marrow transplant is ever needed and no sibling match is available.....

- Lei

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