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Cord Blood Banking

Berkeley Parents Network > Advice > Pregnancy & Childbirth > Cord Blood Banking


Questions

What is your opinion about cord blood banking?

March 2011

I am interested in hearing people's opinions and stories about banking cord blood. I looked through the archives and most of the information is at least a year old and I think this is one of those things where there's always new research and changing opinions. Specifically, I want to know if it's a good idea or a waste of money or scam as some archived advice suggests. I would love to hear from anyone out there who banked cord blood and actually used it. Thanks! Need to decide


What they don't make clear until after you have an interview with them, or do alot of research is... the cord blood is not for your child you just had. Its for the next child or previous child...

Also, I tried to donate mine, but after the long interview in my hospital bed after a long labor AND c section, was told no, because I lived in Europe in the 1980s and there was a miniscule chance that I was carrying Mad Cow disease. Go figure. anon


We banked the cord blood for both of our kids (now 6.5 and 4.5), but we did it for very specific reasons. I have a sister who has had lymphoma and my husband's brother has childhood diabetes; both of these are potentially helped by cord blood if needed.

So far we haven't needed it (knock wood), but we figure it would be the cheapest thing we ever did if either of our siblings got sick again. A believer


Our 5-year-old son is half-Asian and half-Caucasian and we didn't bank his cord blood. But now I wish we had -- it seems that hapa folks have a very hard time finding matches, and his blood could have helped someone. If I had to do it over again I might seriously consider banking, but only if the child was mixed-race. Oakland mama
We really struggled with whether to do cord blood banking when our twins were born two years ago. Despite what all of the cord blood bank advertisements said, the research I saw seemed inconclusive. It's a lot of money to pay for something that may or may not pan out. Some people figure it's worth the money if there's even a remote chance it could save your child's life, but I think it's easy to make that argument if you have enough money that you can afford it.

In the end, we hadn't really decided one way or the other, and then suddenly our babies were born and it was too late. But... not long after our twins were born, one of my husband's closest friends mentioned that he was involved with a company that stores baby teeth for people. Apparently, baby teeth contain stem cells that (theoretically) can be used in the same way that cord blood stem cells can (theoretically) be used.

The cost for the baby teeth storage isn't exactly cheap, but it's waaaaay cheaper than cord blood storage. And what I think is great is that there is time for more research to be done so we can find out if it's really worth the expense or not. And tooth stem cells supposedly can regenerate tissue, while cord blood stem cells just regenerate blood (or something like that).

Of course, the flip side is that if your child was to ''need'' the cells before he/she lost any baby teeth, then you wouldn't have the cells right away (although, apparently, you can have a tooth extracted if you ever ''needed'' the cells).

Anyway, it's just another thing to consider if you're on the fence about cord blood banking and don't make your final decision in time. There's lots of info on their website: http://www.store-a-tooth.com/index.php Good luck! Toothy mom of two


Umbilical cord blood storage?

Sept 2010

I am pregnant for the first time and one of the many advertisements which I have recently received is for umbilical cord storage. According to the advertisement, the stem cells may be life saving for our child sometime down the road. I think I have pretty much decided against it since it is expensive and my husband and I are already struggling in this economy (and the little bit of money we do have will undoubtedly be taken up with other baby safety items). However, I am curious if anyone out there has an opinion on it that I am not considering.


It is not good medicine. It is good marketing. World News with Diane Sawyer did a really good investigative piece on it May 05 2010 and May 06 2010. If you go to the world news w diane sawyer website and search for ''blood cord banking'' you can watch the two segments. My obgyn pushed it on me too and made me feel like a ''bad mommy'' for not jumping at it. I remember he kept saying ''i don't get any kickbacks if you do this...'' Yeah Right! blonderedbrown
We were exactly the SAME way you are! We asked 4 of our very close doc friends for their advice--a pediatrician, GI, neurologist and OB/GYN. They all independantly said don't waste your money. Each had diff reasons, but the main one that kept coming up was that IF this technology does come around it probably won't be for the next 20+ years. And if that was the case then probably anyone's stem cells would work. So save your money! :) I know the cord storage sites list some very enticing stuff, and virtually make you feel like its irresponsible NOT to do it, but we really trusted our doc friends and didn't do it. Suruchi
My husband and I recently decided to bank our baby's cord blood, but we had specific reasons for doing so. My husband has a disease that is treated with immunosuppressive medications. The biggest risk from these meds over the long term is that he will develop leukemia and require a stem cell transplant. There is a reasonable chance that our son's cord blood will be a match, so we banked it against the odds of that happening. That being said, we may have decided to bank it anyway, as our OB, a researcher as well as a practicing physician, encouraged us to do so in anticipation of research developments down the line. It was not a huge stretch for us financially, however. I don't think we would have gone into debt to bank the cord blood, especially if we didn't have any family history of illness. My OB recommended using one of the two biggest companies in the hopes that they will stay in business for a long time. CBR is the biggest company that serves the west coast, and we had a good experience with them. glad we did it
bottom line: it's a total waste of money. don't be suckered by marketing
We banked our son's cord blood last year. I viewed it as gambling. We placed a very large bet on something we will probably never need and if we do there is a good chance they will not work. That said, the technology for these cells is in its infancy and no one knows what the future holds. They could be used to repair his heart after a heart attack when he is 60 or they could be rendered obsolete when stem cell technology matures and you can make stem cells from a bit of skin. Both my husband and I are scientists so we are used to gambling our careers on projects that may or may not work out.

The decision should depend partly on your financial priorities. We have great health insurance so the delivery was free and we decided to scrimp on other baby expenses, getting almost everything off craigslist. I felt that we had saved enough money that we could afford the additional expense. If you have credit card debt or no savings to speak of, don't do it!

There is a public bank of cord blood cells. If you need this type of cells in the future it is possible that you will be able to use the public bank. Currently people of European descent are well represented in this bank. Another reason I wanted to bank our son's cells is because he is of mixed heritage and it may be harder to find a match in the public bank. If you deliver at Alta Bates it may be possible to contribute your child's cells to the public bank since they are one of the few hospitals in the country that collects cells for the public bank.

If you decide to do it, you may want to consider one of the larger companies that has been around for awhile. Although I feel they overcharge for the service they provide, you need to consider that you want a company that will still be around when you need the cells. We considered Viacord, CBR and Stemcyte for this reason. Alternatively, since it is a gamble anyway why not pay less and gamble on one of the smaller companies? the gambler


A good idea or a waste of money?

Dec 2009

My husband and I are expecting our first child in early March. At my last OB appointment, I was given brochures on cord blood banking. I'm looking for opinions and others' experience with cord blood banking...a good idea or a waste of money? Thanks. Alison


There is already excellent advice in the archives, particularly from the pediatrician. I do think the cord blood companies are ''banking'' on parents' paranoia. One thing to consider is that in the very, very rare chance your child might need that blood someday, chances are he will be too big and there won't be enough cord blood for a transplant. Also, leukemia is by far the most common childhood cancer, but if that's what your child gets, the cord blood is useless, as it most likely contains leukemia genes as well. The other diseases that the cord blood companies claim are treatable by cord blood transplant are still in the experimental stages. In your shoes, what I would try to do is donate the cord blood (this is easier said than done, however), then if your child should ever need it, there is a decent chance it would still be available. anon
I asked my OB about this issue earlier this year about the same issue, since companies market cord blood banking pretty aggressively. Its also not inexpensive.

Our OB recommended without hestition to NOT do it. Unless you have a known, rare condition, its a waste of money and futhermore the cord blood would be used for a sibling, not your first child.

There are public cord blood banks (a much better model, in my opinion) that you can donate to and could also access (not marketed of course!). Because we are caucasian, however, we were told that they didn't need any more donations of cord blood. However if you are a minority group, there is a need for more cord blood and you could donate yours.

I think its kind of a scam. I say, support the public model for all.... Jennifer


Our pediatrician gave us this advice and I'll give it to you: If you can afford it, go for it. It is a one-time deal (being able to bank that blood) and though the chances are slim that your child will ever need it, research is ongoing and the list of treatable diseases is growing. It is expensive, but in the off chance that you end up needing it, it will be priceless. blood banker
I looked into it and concluded it was a semi-scam. My advice: save your money for something your child may really need.
We opted to bank the blood, but for a very specific reason. At the time, my sister was just in remission from Hodgkins and there was a decent chance that there would be a match if she needed it. Also, my husband's brother has childhood diabetes and again, a decent chance of a match if needed. We figured that if either of our siblings needed it and there was a match it would have been the cheapest thing we ever did. We now have two kids and banked the cord blood for both of them. I pray we never need it, but if we do (or my sister or brother-in-law does), it is there. We looked at it as another form of ''insurance'' though the cost was not an issue for us and if it were and/or we didn't have both a sister and a brother who might need it; not sure we would have done it. Loves my sister

Did you bank your baby's cord blood?

April 2007

What are new and expectant moms doing these days with banking cord blood? The archives are a bit dated. I'd like to hear a broad range of responses... from those that did bank the baby's cord blood, which company did you choose and why? Does your family have a history of certain illnesses (leukemia, anemia, etc)? For those that looked into it, if you opted not to do it, why not? Cost? Technology? I'm interested in donating my baby's cord blood too. Donor Dot Mom


We banked our daughter's cord blood with CBR (cord blood registries). We have been happy with the company - they were very professional in picking up the blood. We haven't had to use it, so I can't comment on that. My OB recommended picking a profitable company, because you want them to be in business 10-20 years down the road. CBR seems to be the preeminent company. We don't have a family history of diseases currently treatable by cord blood. But we believe that the probability is high of future research leading to cures for more diseases. People we know in these areas of research all highly recommended banking the cord blood. It's definitely expensive (and we're students), but it's a form of insurance. Sarah
at Alta Bates I donated mine. It will be used for stem cell transplants, but if not needed for that, then for research. This was in the fall, I don't know if the program is currently still running. I was thrilled not to let it go to waste. christine
We banked our son's cord blood with Cryo-cell (http://cryo- cell.com/) because this company is a non-profit and was cheaper than many others. We consider it an insurance policy with the hope that someday, these stem cells will help our son (or his future sibling) should they need them. We also have great hope for stem cell research (we have a scientist friend who works in that field and has great hope for it). We hope to have another kid in a year and will bank that child's cord blood too. It's no guarantee, but we would hate to need it in the future and not have it. Anon
thought about banking our 2nd baby's cord blood but heard a report on NPR about how it's highly unlikely to ever be used by our child. (my and my husband's families are healthy, no diseases or anything we know of). So I decided to donate it. If you are birthing at Alta Bates they have something set up with Children's Hospital. I believe they have a person pretty much there the whole time in Labor and Delivery and she comes to you when you first check in and asks if you want to donate. It's pretty easy, but lots and lots of paperwork, signatures etc. The only sad part for me was after dealing with this woman for literally 4 days (from the time I went in and had my pre-op for my c-section, to the time I left 3 days later) she ended up telling me the only way my donated blood would ever get used for any child would be if there was absolutely no other blood available. You see, they ask you about 4 million questions, and if you meet certain criteria your blood doesn't make the grade. I am very healthy, I never even get the flu, but I lived in Europe in the 1980's, therefore my blood could possibly be tainted 20 years later with....... go ahead and take a guess........................... mad cow disease mooo good luck anon
I'm a pediatrician who has had several families ask me about cord blood banking. I'd like to clear up the notion that cord blood banking is a kind a ''biological insurance'' for your unborn child. Many parents believe (and unfortunately many banking companies would have them believe) that if their unborn child should later in life develop leukemia or some other life threatening condition, his own stem cells could be used for a curative transplant. In fact, cord blood would never be used for an autologous (to yourself) transplant because the mutation which eventually led to the disease in question is present in these stem cells. A person needing a stem cell transplant would look to a sibling or unrelated donor. The AAP has recently published a policy statement regarding cord blood banking, recommending it only in the specific case in which an older sibling has a known condition in which a stem cell transplant may be needed. If you are one of these families, you probably already know that Children's Hospital Oakland provides free cord blood banking. If you are not such a family, they will also bank your cord blood for free, but will treat it as a donation. If you need it for a sibling or relative in the future you can use it if it's still there, but it won't be held for you if it's needed for someone else. If knowing all this, you still decide that you'd like to privately bank your infant's cord blood, perhaps on the chance that he might save a sibling who develops a need for a transplant or perhaps thinking that someday in the future our technology might be such that autologous transplants are more common, then do your homework on the company you are using. Collection amounts, transport and processing times, storage conditions are widely variable amongst the different banking companies and really make a difference in whether or not the sample will ever be usable. Believe it or not there are families out there paying alot of money to preserve a cord blood sample that is not even viable - either not enough cells collected or not stored at the correct temperature, etc. I personally feel that the private cord blood banking industry is preying upon a parent's fear of the unknown and taking adavantage of our intense deisre to protect our infant from whatever harm awaits. I would encourage anyone interested in banking cord blood to consider donating to the Children's Hospital Oakland cord blood bank (or at least use the private bank that Children's uses to store their samples).
concerned pediatrician
May 2007

Hi. This is in response to older posting in April 2007: Did you bank your baby's cord blood? Hereís what I learned from my own experience. I ended up using Family Cord Blood Services, www.FamilyCordBloodServices.com, because they were here in California and their cost was a lot more reasonable than either Viacord or CBR. Everything I researched about Family Cord Blood Services came up equal to Viacord and CBR, just not as well known. It just felt a lot more personal going with a private company who's owned by doctors rather than a big corporation. They have all the licensing and accreditations and their lab and storage and everything is all in the same location. It is important for all the licensing and endorsements because you do want a lab that is safe and practicing along with the industry standards. We went with a private bank so that our babyís cord blood is just for us. If we have more kids down the road, we may donate but Iím hearing from friends that itís not so easy to do. It is important for parents that the bank they choose have such affiliations so that they know that company will be keeping up with industry standards and regulations as the field advances. With private companies, your collected cord blood is only for use by your family alone. With public banking, you are given the best match-up and there is no guarantee that if you needed it, yours would be available to you. Hope this helps! Karen


Can you recommend a cord blood storage company?

Oct 2006

Can anyone recommend or not recommend a cord blood storage company? I am expecting in late November and am just starting to read about the different companies and services. Please respond if you've had either a great or terrible experience with any of the cord blood storage companies. Thank you m.c.m


We used Cord Blood Registries for our baby. I've been happy with them, although truthfully, you can't really assess a cord banking company until, God forbid, you need the cord blood back. But they were very professional and received and processed our cord blood with no problems. My obstetrician made the point that it's important to use a large, profitable company because you don't want them to go out of business and sell off your baby's cord blood Sarah
I too looked into this when I was about to have my baby. I believe Children's will bank cord blood for free for a family who already has a child that may need the cord blood. I do not know if you can donate the cord blood to them to use as a match for a child that needs it. If you bank your own child's cord blood, you are paying a private company who may or may not be around in 10 years to keep the cord blood against the remote chance that your child would end up with Leukemia, etc. From what I read, it sounded like these private companies might be a scam at worst, and at best they might or might not have the technology to preserve the cord blood for enough time to make a difference, but you can't know whether they do or not. I thought their sales pitch was really smooth without much real information anon.
We've been really happy with Cryo-Cell. http://cryo- cell.com/index.asp We banked our son's blood there and we'll bank his sibling's blood when that time comes. I believe they are non-profit (not sure about this though), so that's why they cost less than the other companies. I haven't had to retrieve the sample so I can't tell you about that. If you use their services, ask someone who is a current client because we often get coupons to give to new customers where you can save some money Andi

Where to bank cord blood

May 2005

Does anyone have recent experience with cord blood banking? The more we look the more confused we get. Viacord and Cord Blood Registry appear to be the most well- known, but are also the most expensive. Is there any reason that we shouldn't go with someone cheaper, like, say Cryo- cell? Is there any reason to use someone who is licensed by PharmaStem or endorsed by the American Association of Blood Banking? Is there any difference between private and public companies? Thanks for helping us muddle through this. Dawn


I got excited about it but then I talked to some experts about it and I now think it is a waste of money. Cord blood is useful in so few instances and by the time I may need it, the technology might have very well changed meaning that cord blood will not be our only option for treatment. Also, who is to say that the cord blood bank is still going to be around when I may need it.
We had a baby last August and used Cryocell and were very happy with the process and the price. I think they are non-profit so that's why they are so much cheaper than the others. I recommend it. If you can, find a friend who used them before as we get coupons to give out so you can save a little (not much) on the initial price. Andi
I come down on the side of giving the baby all the blood he/she needs at the time of birth. That is, don't bank it for later... Here are some articles that talk about early cord clamping and possible ramifications.. hope this helps with your decision..
http://www.gentlebirth.org/archives/cordNFM.html 

http://www.mercola.com/fcgi/pf/2002/jan/2/umbilical_cord.htm 

http://www.empoweredchildbirth.com/articles/birth/noclamp.html 

http://www.lightparty.com/Health/ChildbirthIntervention.html 

http://www.childbirthsolutions.com/articles/birth/thirdstage/index.php 
KK
January 2003

Can anyone recommend a blood cord banking company to use? I've looked at the website, and there is a bit of information about deciding whether to bank or not, about public v. private banking, but not much information about a good place to do private banking it if you decide to do it.

They seem to vary in price a lot ($315 to $1500+). I've read several brochures, but I still don't know why a $1500+ one (such as ViaCord) would be better than a $315 one ( such as Cryo-Cell).

Is a local company better than one from out-of-state? Are some more stable (less likely to go out of business)? Any recommendations from parents who have done blood cord banking (or just looked into it) would be very welcome. Thanks! mom-to-be


I used Cord Blood Registry, http://www.cordblood.com/index.asp. They call themselves the Gold Standard. I have nothing to compare it to, and my experience with them was positive. It was rather expensive, I think the total cost was around $1500, and there's a yearly storage fee Jill Herschman
I used Viacord one year ago when I delivered my third child. It was very costly at $1500 but I thought that I would regret not doing this if anything happened later in life and we needed this cord blood. I chose Viacord over the local company because Viacord came to the hospital and picked up the blood and delivered it to the Viacord blood bank. Delivering at the holidays would make it difficult for us to package the blood and deliver it ourselves. As well, they have had successful transplants using their stored blood. It was not an easy process. I delivered at John Muir and they were reluctant to draw the blood because they said they were too busy. I quickly explained that I paid $1500 for this draw and then they did it. However, the nurse had someone from another department draw the blood. So, my recommendation is that you ask if your doctor and hospital are willing to do thisin advance. My doctor was fine with it and had to sign some papers before I delivered. The last item is that Viacord was not as easy to do business with as they ahd claimed. They said they would pick up the blood within two hours of the draw and that didn't happen. This made me very nervous and I had my husband call several times. They finally came very late in the evening...close to midnight. I couldn't relax or sleep until they picked up the package. In the end I am glad I did it and told Viacord that they needed to refine their procedures for pick up. Kelly
I used Cryo-Cell for storing my older daughter's cord blood because of the low price. I would have used them for my new baby but she was unexpectedly born at home and we were unable to collect her cord blood. I was quite upset about this because we have a history of leukemia on both sides of our family but was reassured by a pediatric oncologist friend that I shouldn't worry about it. The explanation was a little more complicated than I feel I can communicate as a lay person, but basically she felt that there was only one situation in which we would need it and that would be if our daughter were to develop a highly aggressive form of cancer and she were to need a bone marrow transplant immediately and no donor could be found. Evidently, it may be more effective to do a transplant not using your own cells. In terms of future uses, she felt that the other sources of stem cells would also be viable. That being said, it certainly doesn't hurt to do it, it's just whether or not you feel it's worth spending the money on it. Personally, I do and I would store my younger daughter's cord blood if given the opportunity, especially as Cryo-Cell does charge so much less. They say they are able to do this because they are a non- profit. I have no idea if they are any better or worse than the other places.

If anybody who is expert on this has found fault with my understanding of the use of cord blood storage, please feel free to correct me. Hannah


About three years ago, I researched cord blood banking options. Initially, I was only aware of Cord Blood Registry, a company on the SF Peninsula. It turned out to be one of the most expensive.

Ultimately, we used Cryo Cell International of Clearwater, FL. It is a publicly traded company that used the University of Arizona's facility that is now used by Cord Blood Registry before Cord Blood Registry enticed the lab to break its contract. Cry Cell won a lawsuit in SF Superior Court and used the money to open its own facility in Clearwater, FL. Therefore, it does not need to rely upon contracts with independent facilities. Because it is a publicly traded company with other lines to its business, it appears more financially viable than other companies out there. I spoke with Cryo Cell's principals and asked about the difference in cost between this company and others. The people told me that they were looking for volume and not spending lots of money on marketing. We paid approximately $250 up front and pay $50 annually. The annual price is guaranteed by contract to remain the same. Cryo Cell also seemed to have more services available for fewer costs in the event that the donor ever needed to access the cells.

Back in early 2000, none of the companies had actually used the samples stored for the actual donor. They only had anecdotes about the use of the cells for siblings in need. They were very promising (of course) about future uses if necessary and about the participation in their programs by health care professionals. Alicia


My father actually owns an umbilical cord blood bank, the California Cryobank. I had the experience of storing my cord blood with a company immediately prior to my father opening the stem cell branch of his cryobank (California Cryobank is the largest sperm bank in the country and was established in 1978 so their experience in storing frozen tissue is vast.) The bank that I stored my cordblood with in 1996 was Viacord and they were incredible about marketing. The follow through was amazing and it was great - I took notes for my father's bank about how this was the way to go - until I gave birth. Thereafter, it all fell apart. The staff at Viacord must have called me in the post-delivery room 15 times in one afternoon trying to coordinate picking up the product. Which they finally did but it was awful and intrusive. Later, when California Cryobank was up and running, I wanted to ship the blood to my father's bank (his yearly cost is $75 which was less but obviously for me it was free) and I kid you not, it took them seven months to ship it. The reason? Viacord is a marketing company which is completely separate from the storage facilities so they have no connection with the day to day operations and logistics. I of course am biased and want to recommend the California Cryobank which will store in their own facilities (one in Stanford, one in Los Angeles and one in Boston), but do check around. I know that the National Cord Blood Registry is good but I do not know if they are in control of their own sites. If you contact the cryobank they will send you some infomraiton including a nice video with me and my daughter in it. It's pretty informative and you can perhaps use that as your base. Their number is (800) 400-3430 or URL http://www.cryobank.com/. Good luck and this is a very wise thing to do. Hannah

Donating cord blood

June 2004

Hi, Not sure if anyone has any experience with this, but I am interested in donating the cord blood, or should I say my son's. Specifically I would like to donate to an organization that researches spinal cord injuries, treatments. A friend of mine was in a motorcyle accident and suffered a spinal cord injury. I will be delievering at Kaiser Oakland. Thank you! Lisa


I looked into this about 1.5 years ago when my son was about to be born, and I was told that there used to be a donation program at Alta Bates (where I delivered) but it doesn't exist anymore (I think due to funding). I called the Red Cross and Children's Hospital. So unless things have changed, it is pretty unlikely that you will be able to do it, which I think is a REAL shame. martha
We donated our son's cord blood to a company called Cryo Bank International in Florida. It will either be used for research or be banked and used by any child in need who is a match. If you contact them, they will send you an information package with all of their options. It was the only place in the country that we could find to accept a donation when our son was born 16 months ago. They sent a collection kit for our doctor to use and they had Fed Ex come pick the package up at the hospital within hours of our son being born. Several people told us Children's Hospital in Oakland had a donation program, but at that time they were not taking any donations. But you could also give them a call and see if they are collecting again. Good for you for wanting to donate! Whitney
hi lisa, i don't think there are too many organizations out here where you can donate cord blood (even the redcross has stopped accepting it unless you live in oregan or washintong state, i think...). but, Cryobanks International is a major organization that does accept donations.

we had a kit from them and were ready to use it for our homebirth baby but alas, we did a waterbirth and there were too many things on my mind by the time we should've or could've done the cord blood donation.

you should check them out. they're very organized and they'll give you the kit to use, for use in the hospital or at home or at a birthing center. http://www.cryo-intl.com/company.html

Cryobanks International
270 S. Northlake Blvd
Suite 1012
Altamonte Springs, FL 32701
Tel. 407.834.8333
Toll Free: 800-869-8608
Fax: 407-834-3533
E-mail: clientservices at cryo-intl.com
anon
We recently went through this with the birth of our baby girl - I have a friend who underwent a bone marrow transplant several years ago (before the stem cell option existed), so I wanted to donate to the National Marrow Donor Program registry. Unfortunately, most hospitals don't actively participate in cord blood collection, and most cord blood banks are designed for private collection (you pay to have the cord blood stored for your own use). Apparently it's rather delicate stuff and expensive to collect/store/use - plus, surprisingly, the patient need isn't that great (different story for research).

We found only one company that accepts public donations of cord blood from anywhere in the United States - Cryobanks International. I couldn't find out very much information about how they distribute the cord blood - I'm sure they turn a tidy profit - but I figured it was better to make it available to someone in need even with a mercenary middleman. I would love to hear of anyone who donated to a research program.

Anyway, the Cryobanks donation procedure is simple and free - you fill out a bunch of forms (preferaby before your 35th week of pregnancy, but if you miss that date, as I did, they can do an expedited registration) and they send you a kit, which has all the instructions for your care provider. Immediately after the cord blood is collected, you call a special 800# and FedEx the package back to their lab. I delivered at Kaiser Walnut Creek and the staff handled it exceptionally (you have to tell each new shift about it, though).

Anyway - here are some links that might be helpful:

the National Marrow Donor Program Web site http://www.marrow.org/NMDP/cord_blood_bank_list.html

and the Cryobanks International Web site http://www.cryo-intl.com/cordblooddonation.html Good luck! Jean


Regarding Cordblood Registry- Ladies,there is a local company by the name of cordblood registry. www.cordbloodregistry.com I wished I had stored my Son's umbilical cord as it would have been a treatment option for him post a traumatic birth/ stroke. Please check out their site, they are an outstanding company. Tracy

Want to learn more about cord blood banking

August 2002

Hello, My husband and I are expecting our first child in the next 3 weeks or so, and are interested in learning more about saving Stem Cells from her umbilical cord. I'm very high risk for breast cancer (all over my maternal family), and my mother had a stem cell transplant for breast cancer treatment a few years ago. Seems like it might be worth the expense for us to keep some stem cells just in case. I'm wondering...
- Where are some good resources for information about the benefits of saving stem cells?
- What is the price range?
- How do I go about making this happen? I'm assuming I need to arrange this stuff in advance!
- About other people's experiences with saving stem cells
Many Thanks, Julie


Those of us who do bank our children's cord blood usually have family history reasons for doing so (in my case, losing my first daughter to childhood cancer.) There was a very good article in the Wall Street Journal about it a few months ago. I will email you a link to that story if you contact me directly. That article recommended the following website, unaffiliated with any cord blood banks, as a source of information about cord blood banking: http://www.parentsguidecordblood.com/ Best of luck to you. msroser
I banked my baby's cord blood because my brother has malignant melanoma. Although there's nothing he can do with them right now, in the future there might be, which is what motivated me to do it. We used Cord Blood Registry http://www.cordblood.com/. Their website can answer all of your questions about the reasons, the advantages, the process, etc. I think we ended up spending about $1500 total, and there's a $100/year fee. As far as I'm concerned, if you can afford the fee there's absolutely no reason not to do it. You never know what kind of medical advances will be made in 30 years. Also, if my baby ever needs a transfusion, I can use it for him and not worry about the source of the blood. You do need to arrange it in advance, but I'm not sure that you'll have enough time at this point, with only 3 weeks left. From what I can remember, they needed to have a deposit at least 30 days in advance, but there's also an application process that involves you filling out forms, getting your OB's signature, I think some prenatal blood work, and I don't think 3 weeks is enough time. But you should definitelly contact them, just in case. As for my experience, it was a pretty painless process, I had to bring a kit with me and give it to the hospital staff, and then you have to mail it off right away! it's kind of hard to have to remember details like that when you're having a baby, but I put my husband in charge of it and he took care of it. I do remember him having to mention the kit multiple times so that the staff wouldn't forget about it, but I was in labor for 30 hours and went through 5 labor nurses, so maybe he just told each new one as they came on. But the doctors knew exactly what to do with it and it all worked out. Feel free to contact me directly if you have any more questions. Good luck! Jill
We also decided to do cord blood storage because my husband and I both have a history of childhood and adult leukemia in our families. The most inexpensive option at the time my daughter was born in 1999 was through Cryo-Cell International. I believe we paid something like $300 for the collection kit, overnight special handling express shipping charges, and then $50 per year for the storage. It's important to keep in mind that at the time we collected my daughter's cord blood, they weren't guaranteeing the viability of the sample past age 18, i.e. this hasn't been around long enough for them to know how long a sample is good for. Perhaps I'm remembering wrong or this has changed. Good luck deciding and have a great birth. anonymous
I know that the person writing in asked about banking their own child's stem cells, however, I just wanted to put in my two cents worth about donating the blood from your umbilical cord in the name of research. The only hospitals in the state of California that currently take donations are Alta Bates in Berkeley and another hospital in southern california (I don't remember which one). It's a really easy procedure and it doesn't cost you a thing. Basically, you just contact the American Red Cross Blood collection program located at Alta Bates. You answer some questions, they take the umbilical cord at the time of birth, and after you give birth you have to give a bit of blood so that they can test it to make sure that they can use the blood in their programs. The stem cells from your umbilical cord could further someone's research or could save someone's life. If you aren't thinking about saving your own umbilical cord in one of the banks, I highly recommend donating it. elizabeth
October 2001

we'd like to find more information about cord blood donation locally, and aren't getting too far via google or the parents website. If anyone has more information or experience, please share it! We don't want to join a registry and pay exorbitant fees, we just want to make sure the cord blood is not wasted after our baby is delivered (either Alta Bates or Kaiser WC).


I wanted to arrange for a donation also, but without a lot of hullabaloo and costs...I asked my OB at Kaiser WC (in May of 2000) and she said that they weren't set up to do that but that there are groups out there who will do it for a fee...we did not have the energy to follow up with that, but just wanted to donate if it was part of the usual procedures. Sharon
I just came across an old "Dear Abby" column on cord blood donation. The (national?) phone number and URL are 888-267-3256, www.cordblood.com. They could probably connect you with the local program. Fran
If you want to donate cord blood and are delivering at Alta Bates you can call the Alta Bates Red Cross Cord Blood center at 204-3621 Lisa
October 2001

I'd like to know whether you stored your child's cord blood. What were your reasons why or why not? What company did you use? Also, has anyone who delivered at Alta Bates donated cord blood? If so, how? many thanks


We definitely banked our baby's cord blood and are paying for its storage. We want to be sure that our baby has a supply of stem cells that are his own perfect match for the future. There are tremendous advances going on now in the area of stem cell research. Cord blood is not the same as embryonic stem cells, or adult stem cells. But as research progresses in those fields, scientists are learning how to induce stem cells to take on different roles. Although current marketing literature from the private cord blood banks state that it is unlikely that an individual will need their own banked blood, my husband and I believe that as the uses of stem cells increase, the possible needs for the individual expand also. For example, stem cells are not currently a treatment for diabetes. However, researchers have now been able to get bone-marrow-derived stem cells to develop as insulin-producing cells. It is impossible to say how many diseases could possibly be treated with stem cells in ten or twenty years. I think that we did a thoughtful study of this field, as both my husband and myself have doctorates in molecular and developmental biology. There are many arguments against privately banking cord blood. One could say that as research progresses, maybe they will be able to use cells that aren't a perfect match, or that doctors will be able to use adult stem cells that they harvest at the time of need from a person's bone marrow, or skin, or fat. There are also arguments that if more people donated to the public banks, there would be no need for private banking. If our son needs his own cord blood, it will be a serious situation and the blood could well save his life. I could not think of a more important gift we could give him than to preserve this resource. We used Viacord and I delivered at Alta Bates. Alta Bates was not very helpful about the collection--I would definitely have someone (doula, family member, or friend) really keep on top of that as you and your partner will be busy. Kimberly
I did store my son's cord blood. At the time I was pregnant with him, my greatest fear was that my child would get a fatal disease and for some reason at the time I was focused on childhood leukemia. Bone marrow transplants are a last-ditch effort to cure leukemia, and the problem with them is imperfect tissue match, but with one's own stem cells from the cord blood, the match is (of course) perfect -- and thus there is no chance of rejection. So this "insurance" that my child wouldn't die of leukemia was the first reason I did it, but it turns out that stem cells also act as insurance against dying from a number of other diseases, mostly cancers, and research uncovers new uses for stem cells all the time. A side benefit, which is nice, is that the mother (but not the father for some reason) has a 50% chance of a tissue match with a child's stem cells, so storing cord blood can potentially provide some insurance for her too! Siblings also have a good chance of a match but I don't know the exact probability.

I stored at a place called the Cord Blood Registry, and chose it for no other reason than that a friend of mine had also done it there, and since he was a doctor I figured he'd chosen a good one. I don't know the number, but it's probably easy to find. If you like, email me and I will get the number to you. Also I suspect that the storage facilities are more or less interchangeable.

I birthed at Alta Bates, and the midwife took the blood. It's a very easy procedure, and I'm pretty sure generally the person delivering your baby does it. You have to Fed Ex the blood right away, you have 24 hours or something to get it there or else the cells will die. This is actually fairly stressful. I suggest assigning someone EXTREMELY RELIABLE to do this. My person bowed out at the last second and we were scrambling to find someone to do it. Everything turned out fine though.

My last piece of advice is to register quite a bit in advance -- I think I did it a month or so before my due-date and I had to pay extra. It's very expensive up front (about $1000) but only $100 each year on your child's birthday. And once you pay that initial fee, you don't pay it again for additional children. I figure $100 a year for this peace of mind is a bargain.

Good luck with your decision,
Nancy


I chose to have my daughter's cord blood stored because there is a history of leukemia in both my and my husband's families. I also chose to do it because I have worked in medical settings where I saw children who needed a life-saving bone marrow transplant who weren't finding appropriate matches. Also, there is so much more to learn about stem-cell usage that there may be more uses for the cord blood then we even know about.

That being said, if I didn't have the family history of leukemia, I might have decided to donate the cord blood rather than store it. The chances of your child actually needing to use the cord blood are pretty slim while if you donate it, you may be able to save someone's life who needs the cord blood now. Additionally, I was told that the blood would probably still be viable until my child is around 18 but after that, they could not say. We used Cryo-Cell in Florida as the company to store our daughter's cord blood as their rates were significantly cheaper than their competitors at that time. I don't remember the initial fee - I believe it was a couple of hundred dollars and we now pay $50 anually for storage.

Good luck with your decision. Hannah


2000

Has anyone banked their child's cord blood? What bank did you use? How did the hospital deal with this, (which hospital)? How was the experience?


As an expectant parent (due 7/3) I've recently been inundated with dubious mailings from cord-cell blood banks. It's got me thinking--is this whole banking thing a money-making scam? And alternately, are there any worthy places locally to donate cord cell blood? I heard something about Children's Hospital of Oakland accepting donations. Does anyone have any experience with this? My OB was so unfamiliar with the concept that she actually asked me to share with her any info I gather myself. Thanks for your advice. Darcy
This is for the person with questions about cord blood banking. I did some research on it and concluded that private storage was a rip-off for the average baby. It is very expensive, your child has an extremely rare chance of developing the type of serious illness that requires cord blood, and even if he/she did, you might not be able to use the cord blood because it could contain the disease your child later developed! The only time you could use the cord blood is if another one of your children got sick and needed his/her sibling's cord blood for a transplant. And if that happened, there are national cord blood banks that try to find matches for sick children. All of that pertains to the private blood banks. I think public cord blood donation is an excellent service, but unfortunately it is done in only a few cities. Children's Hospital in Oakland has started it on a small scale, but I believe it is geared at people of color. There is a shortage of cord blood from minorities throughout the country and Children's wants to serve as a national repository. Good luck in your decision. Franny
We banked our son's cord blood. There is a web site that explains the program it is: . I found this to be the least expensive company that handles cord blood. It requires a lot on your part though. You are responsible for making sure the Dr/hospital is aware of the procedures (they send you a kit with very detailed instructions). You are also responsible for shipping the contents out after they are collected. You have either 24 or 48 hours to do this and it's generally the last thing you want to think about after having a baby. It's best to assign someone else the responsibility for shipping it so you don't' have to worry about it. The hospital I delivered at is out of the area and they were unfamiliar with handling cord blood banking, but they did fine.
We banked our child's cord blood in August 1999.

I called California Cryobank (CC), and asked if they did it and how much it cost. I did call one other place that did it, but they were out of state, and were not cheaper. We already had an account with CC (husband's frozen semen, saved because of testicular cancer), so they gave us a 10% discount. CC is a reliable company. The total cost is $1100 plus a $85 annual storage charge after the first year.

First, you have to fill out some forms. It's best to do this far in advance. (I waited until about six weeks before my due date, and rush fees make this more expensive.) I got these forms by calling them, but they are also available on the CC web site: < http://www.cryobank.com/cord.html> There is a health questionnaire for the mother, but even though I had to answer yes to some of the questions, they were still willing to bank the cord blood. (I was afraid at the time that this questionnaire would eliminate me.)

Your doctor must agree to do this. S/he also fills out one of these forms. Our doctor's (Dr. Eric Spitzberg) attitude was that it was OK with him, but he thought the whole process was unecessary, which we hope will be the case. (CC will also send your doctor a video about the process. Mine did inform me that he watched it.)

Then you send them a deposit, and they send you a collection kit (which comes in a medium size cardboard box.) The collection kit has all the information for the doctors, and how to send it in. You must remember to bring the kit to the hospital.

Here's what happened at the hospital (Alta Bates.) We were at the hospital for a little while getting settled in, and my husband had retrieved the cord blood kit from the car. (My suggestion: don't leave it behind in case things start to happen quickly.) At about 7:45, they checked me for the first time, discovered I was at 7-8 centimeters, and the baby was breech (surprise.) So I was then rushed to the C-section room within about 10 minutes. We told the doctor on call (Dr. Corey, who I had never met before) about the cord blood kit, and he said he had never done one, but was willing to do it. So then I had the C-section, and I suppose they did whatever the collection kit said. It's apparently not very complicated. I couldn't see, and my husband refused to watch (He just looked at my face.)

After they had finished the C-section, we went to the recovery room. They had done the collection, but somehow we had lost the box the stuff was supposed to go in. We sent a nurse to look for it, but we never found the box which had the address on it, for example. So we called CC (They have someone on call at all times.), and they said we could put it in another box. We asked for a box at the hospital, but this difficult to get. Finally we found something. (My suggestion: keep careful track of everything CC sends you.) We called the courier service, and waited. (CC has some special courier service for this.) Within an hour or so, the courier showed up, and took the box away.

Because we were concerned over the box mix up, and because Dr. Corey (who seemed like a good doctor and was perfectly nice, but I only talked to him for about 3 minutes before the C-section, and haven't ever seen him since) had never done cord blood collection before, I was calling CC every few hours to see if the cord blood had arrived, and whether everything was OK. It did arrive, and everything was OK.

Why we did this: Well, first my parents offered to pay for it. Secondly, I had an extremely difficult pregnancy, and was totally paranoid about health issues at that point. So I was trying to do everything I could think of. On a societal level, this is an expensive process that will only be useful something like one in a million times. If I were an insurance company, I would probably refuse to cover it. But as an individual, I feel that this is a kind of catastrophic health insurance I want my daughter to have. I would do it again if we are lucky enough to have another child.


We used Cord Blood Registry. 1-888-267-3256. They are expensive, but we didn't know of anybody else at the time. We also wanted somebody that may stick around. The procedure was easy. We gave the instructions from the kit to our doctor (Dr. Sakamoto) prior to delivery. Everybody in his group has collected before and wasn't concerned about it. We brought the kit to the hospital, Alta Bates, and reminded them and the delivering doctor that we were collecting. The procedure was simple. The trick in the whole matter is getting the collection back to the registry in a timely manner. Because we didn't want to worry about rushing to a FedEx office, we had their recommended courier pick the sample up at the hospital. That was much less stressful. The only glitch was they wanted some paper work filled out when we called them and we had to find a fax machine. (Alta Bates was helpful in that regard.) That paperwork should have been done ahead of time, so be sure to ask and insist on getting stuff. We asked, but didn't get it, so ask a couple of times. Good luck.
[Editor] The following is a letter received in the Parents mailbox

October 2003

The Umbilical Cord Blood Education Alliance is a non-profit organization providing a public service to help educate expectant parents, health care providers, and the general public about cord blood. We provide unbiased and competent information about all options for cord blood (discard, donate, or privately bank) to present balanced education about cord blood and hematopoietic stem cells.

You may view our new brochure, "Making An Informed Decision For Your Baby's Cord Blood" at this link; http://www.gins.net/ucbea/pdf/ (skip parent files, click "cover" and "inside" of brochure). This brochure is a free download available to anyone who visits the UCBEA website. Your organization may also print as many brochures as you like to help those who wish to learn about cord blood.

The UCBEA website will launch in the next 30 days at www.CordBloodEducation.org. Please feel free to contact the UCBEA if you would like to learn more about our organization, literature, or request our assistance for special programs.

Sincerely,
Shannon Kennedy
Umbilical Cord Blood Education Alliance
shankennedy AT comcast DOT net
(615) 907-0438 

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