Cord Blood- did you bank it?

[Kelly's Girl]

My DH and I were discussing this last night and have decided to at least look into the possibility of banking the umbilical cord blood. I have no idea where to start my research, so I came here first!

Did you consider banking the cord blood of your newborn? What was your ultimate decision, and why? How costly is banking in your area? And any other questions I'm too ignorant to ask....

TIA!

[Renrel]

We did not. I did alot of reseach and came to the conclusion that the likelyhood of every using it was very very low given the high cost of maintaining it. First there are only a few situations at the moment where cord blood might be helpful. Second in most cases where it might be helpfujl the child will not be able to use their own cord blood because that sample will have the same problems as the child's own body (not a very good scientific explaination but the general gist). Third in many case the samples are unuseable by the time they are need due to issues with storage. The more questions I asked about numbers the less I felt it was a worthwhile move. If you have the money to toss around and are willing to pay alot of money for insurance against the very small possibitity you will need it then go for it, but otherwise I would advice against it. At this point in time they are playing to your fear of regetting not having done this in the very very very slight chance you someday are in the situation where it might have helped. There are a few cases where there is a family history of certain illnesses that it might be worthwhile to bank if in case another famiy member might be able to use it but I don't remember what they are right now. They did not apply to my family.

[adoredh]

DH and I choose to donate our baby's cord blood. We can't afford the cost of banking it, ($1700 to $2000 to start and I think $300 a year after that)

Rather then the blood going to waste, I would love to know that it might have the chance to save someone's life. Should we need to use it in the future, and they still have it stored, it doesn't cost us to use it. That's a small piece of mind, not that I expect it to still be availible. :)

[lml41981]

Here is another thread (http://constantchatter.com/showthread.php?t=2591) on this topic. After reading this thread and doing more research (other than on the cord blood bank websites), I have decided also to donate.

[emschwar]

I looked into banking, but just couldn't justify the cost. I would have liked to donate, but our hospital didn't participate in cord blood donations.

[Renrel]

I talked to my doctor about donating but was told there was no place accepting donations at that time. Maybe because we have at least 4 hospital with top level NICU unit within 15 minutes of each other and several other hospital within a half hour there is just more supply than needed? Or maybe he just did not want to be bothered or misunderstood the question.

[BTB]

We chose to bank. It was $995 to start, and $115 per year after that.

($1700 to $2000 to start and I think $300 a year after that)

Whichever banks charge this, I didn't encounter as I looked into the charges levied at different places. I'd say average of the big national banks was $1400-$1600 to start and $95 yearly thereafter.

I agree the current likelihood of needing and using the blood is low, however, the utility of cord blood stem cells in a variety of disease processes is an area of intense research and should the opportunities expand during DD's lifetime - as I feel they will - we'd like her blood to be available. We intend to bank with any future children as well, should one have a genetic disorder which renders his or her own blood useless against the hypothetical future condition for which it's needed, sib blood has a 1/4 chance of being a perfect HLA match, and a higher chance (depends on then-current immunosuppressives, and the procedure being done, exactly what the percentage is) of being a close enough HLA match.

As I posted in the thread that was bumped, for DH and I the only reason not to bank (for us, had we chosen not to do so) was cost, and while it's certainly significant it was not insurmountable.

[mamax2]

We did not bank my DD's cord blood because at the time, I just wasn't sure that the science justified the cost. Now that I'm pregnant a second time and my father just died from multiple myeloma (a blood cancer) and two of his uncles have blood cancers and both of his parents had cancer, I'm starting to re-consider. My MW actually told me that with my family history she wanted me to research it and consider it, so that's what I'm doing now. I've just started collecting information and it's kind of mind-boggling to me that something like this can even be harvested and stored for such a long time. We haven't decided what to do yet, but we're working on it.

BTB (and anyone else who DID bank) ~ Can you share the name of the company you chose and maybe your top reasons for choosing that company?

[emschwar]

mamax - my dad died from multiple myeloma also. That's why I considered banking DS's blood, but the OB didn't think it was worth it.

[Pookie]

We used Alpha Cord and have been happy with them. Because of our blood types, we wouldn't bank again for any future children. With the current research being done, if DS (and future children) were too need it, we would be too mad at ourselves for not doing what we had the chance to do. Yes, it's costly, but not a fortune. All of our doc's agreed, too, better safe than sorry.

[Bubbas]

We donated the cord blood. For those of you whose hospitals don't participate, here is a link where you can request a kit to bring with you to the hospital. http://www.cryo-intl.com/cordblooddonation.html You print out the form and fill in your info (I don't remember if your doctor needs to fill in anything). Mail it in and they will send you a kit to bring to the hospital. After the donation is taken, the hospital calls an 800 number and the kit gets picked up. Just let your doctor know ahead of time. You need to request this before your 35th week.

[mamax2]

emschwar ~ I actually knew from your sig that your Dad had MM too - does your family have a history of blood cancer or was he the only one? Even though my Dad had MM when my DD was born, we didn't bank her blood, but we've since discovered a case of leukemia and another case of Hodgkins so I think that may be why my MW suggested we look into it now. I don't know, I'm still undecided and although I don't want to make a decision based upon fear, my family history is kind of worrying me right now, kwim? If you don't mind talking to me offline, I'd be interested to learn more about research or resources (or even just why Dr's didn't recommend banking given your Dad's MM) you may have discovered when you were making the banking decision. If you don't want to talk about it, I totally respect that too. Sorry to hijack the thread!!

[alienhost]

bump for fats

[LIZNKEITH]

We looked in to it and ultimately decided to donate it through Cryobanks Intl. I'd rather donate and be sure that it was going to be used. It sounds a little cheesey, but on the day I gave birth to my daughter I got that warm, fuzzy feeling twice that I had given life. Also, my understanding is that if we should ever need it, they would try and make it available to us.

[alienhost]

We didn't bank it and since DD was born early and really surprised us we weren't able to donate it :( which I would have like to have done. Anyway this is an article I found last year that helped us make a decision it was in the other thread but I'll put it here as well as an FYI.


I really knew nothing about cord banking and this article was in the Boston Globe - I thought it was very insightful. I think it provides a more objective view than the literature from the cord banking companies.

PEDIATRIC PERSPECTIVE
Cord-blood banking only makes sense if it's a shared effort
By Dr. Darshak Sanghavi | February 1, 2005

How much would you pay to guard your newborn against the future risk of fatal cancer, heart disease, immune problems, and many other serious diseases?

Companies such as Cord Blood Registry, Boston-based Viacord, and about 20 others are betting that anxiety about these illnesses will induce parents to fork over about $1,500 plus a $100 annual fee to store a healthy newborn's umbilical-cord blood as ''insurance."

Painlessly harvested during childbirth from the mother's placenta (which is usually thrown away), cord blood can be frozen for storage, and under certain conditions, used years later for a bone-marrow transplant to cure some cancers and genetic problems.

Cord Blood Registry stated in September that it had 250,000 stored units, and reported that business doubled last year. Some obstetrician colleagues of mine estimate that one in five patients pay to bank cord blood.

Yet the American Academy of Pediatrics states ''private storage of cord blood as 'biological insurance' is unwise," and the American College of Obstetricians and Gynecologists states parents shouldn't feel they must ''invest considerable sums in such a highly speculative venture."

It's quite unlikely a family would ever use privately banked cord blood. Moreover, private storage undermines what could be a far more useful public system that saves lives.

The presumed advantage is that cord blood would be an exact match for the child or family member in need, and so won't be rejected if used someday for a transplant. But many companies exaggerate the likelihood that a family will need privately stored cord blood. For example, Viacord's website states ''the lifetime odds of being diagnosed with a disease treatable by cord-blood stem cells is one in 27" and that future research may increase the risk to ''one in two." These figures sound impressive, but are misleading.

Cord-blood donors who develop genetic problems or cancers like leukemia that fail to respond to chemotherapy can't use their own cord blood because it contains the same genes that caused the disease in the first place. Almost always, these patients need bone marrow donated by someone with different genes. According to the National Heart, Lung, and Blood Institute, the odds of using cord blood for a self-transplant may be as low as one in 200,000.

Some parents bank a child's cord blood to benefit siblings. But Dr. Joanne Kurtzberg, a pioneer in cord-blood transplantation, told the New England Journal of Medicine last fall that fewer than 1,000 children a year would need a sibling's cord blood. Since about 4 million children are born yearly, the chance of needing cord blood from a sibling is roughly one in 4,000. The risk is probably lower in families with no history of genetic syndromes or cancer. Additionally, a child's cord blood has only a one-in-four chance of being an exact match for a brother or sister.

Simply saving cord blood doesn't guarantee it's usable, and the quality of private banks may vary. Though cord-blood banks must register with the Food and Drug Administration, the federal government does not regulate collection and storage procedures. According to Kurtzberg, half of the cord-blood specimens she has considered for transplantation have been unusable.

Some private banks imply that cord blood contains many ''stem cells" that can heal organs like the brain and pancreas someday, thus curing Parkinson's disease, diabetes, and other illnesses. But cord blood isn't rich in the specific kinds of stem cells that might heal these organs, so this use is theoretical at best. Also, some stem cells can be obtained later from children and adults, so storing cord blood isn't the only chance to get them.

In the end, families with a history of cancers like leukemia or certain genetic diseases (like sickle-cell anemia or Hurler's syndrome) that improve with bone-marrow transplants could consider privately banking cord blood with a reputable company, since there is a reasonable chance that a child's cord blood could be used by another member of the family.

But the value of private cord-blood banking for healthy families doesn't seem to justify the costs, though for the well-off, it's at least a harmless way to satisfy medical anxiety, unlike, say, whole-body CT scanning with its radiation exposure and wild-goose-chase findings.

What makes more sense is having a public cord-blood bank that could connect donors to people in need. Today, about a quarter of patients can't find a match when they need a bone-marrow transplant, though about 5 million people are registered bone-marrow donors. (The problem is worse for minorities, because they are underrepresented in the donor pool.) If Americans saved and shared cord blood from all 4 million newborns each year, thousands of lives might be saved.

Consider how regular blood banks work. People donate for altruistic reasons and aren't charged to give. Blood is not treated as a commercial commodity but a publicly managed resource distributed to anyone who needs it.

In a similar vein, Japan has created a centralized, public bank of cord blood by amassing donations from birthing mothers. And it's working. According to The New York Times, more than 40 percent of all bone-marrow transplants in Japan now use publicly banked cord blood.

No true national bank exists in the United States, although two centers, the National Marrow Donor Program in Minneapolis and the New York Blood Center, accept voluntary cord blood donations and allow anyone who needs bone-marrow transplants to search for a match. Almost all US cord-blood transplants have come from these two banks -- not the dozens of private ones -- because they make matches within a much larger group than just one family.

Trading on parents' anxiety is certainly a valid foundation for business, and few argue that private cord-blood banks should be illegal. But their existence shouldn't draw attention away from the real need, which is a national, public cord-blood banking program.

Dr. Darshak Sanghavi, a clinical fellow at Children's Hospital and Harvard Medical School, can be reached at www.prevista.net/map.

? Copyright 2005 Globe Newspaper Company.

[jh124]

For a variety of family factors, we chose to bank our baby's cord blood. My first choice would have been donation, but our hospital didn't offer that as an option. I was surprised at how few hospitals participate in public cord blood donations.

I read a ton of literature and made up my mind to do it. I realize that there is a chance we may never be able to use it - either not need it or not use it to treat a particular disease. However, medical research is constantly coming up with new uses for cord blood.

But, you know, we could afford it, so why not? Total yuppie attitude to take, I'm sure. But I have homeowners insurance even though I might never need it.

[kalee]

We decided to bank DS's cord blood as well and had a good experience with CBR. We did a lot of research and there are definitely pros and cons but we felt getting this "insurance" was the right choice for us.

With that said, CBR gave us two coupons to pass along to family and friends who want to bank their baby's cord blood. Each coupon is for a $250 discount. None of our family and friends can take advantage of the coupons before they expire on 9/30/2006 so I wanted to offer them up to folks here. In the interest of full disclosure, I earn a free year of storage if the coupons are used. If you are planning on banking with CBR and want the discount code, please PM me.

[Jenyfer9]

We donated ds#2's cord blood. It was so easy.

[kindermom]

I found a few more resources on the web...

From Storknet (http://www.storknet.com/cubbies/pregnancy/choosecordbloodbank.htm): Questions to ask/how to choose.

From Stem Cell News (http://www.stemcellnews.com/articles/stem-cells-banking-on-cord-blood.htm): Interesting article...6,000 withdrawals have been made to date. This is much higher than my OB estimate.

From the New England Cord Blood Bank, Inc (http://www.cordbloodbank.com/?eZSESSIDnecbb=d60f54832cb7186cf326bcef08db5f4c): They have a good FAQ. They cite 2,000 transplants (and do not specify how many from a private bank v a public bank).

Bank Cord Blood.info (http://www.bankcordblood.info/bankingpros.html): Estimates that 1 in 20,000 families will need cord blood at some time.

There is actually a dearth of information out there, including looking at the FDA and the national Institutes of Health. I suppose that is where the controversy is.

FWIW, my OB recommended against it. She said that the number of withdrawals from the private banks to date were way to small to advise for it. I figure that if I ever need to use it, I will have another child.

If it works for you, more power to you!

[Rico'sAlice]

I just wanted to mention another option. Let your baby receive all of the valuable cord blood that they need at birth.
I believe strongly in the benefits of delayed cord clamping. (Waiting until well after the cord has stopped pulsing) Although some doctors will tell you that you can do both (delay clamping and still donate/bank) this has generally not proved possible among mothers who attempted this. Either they got forced into early clamping by doctor immediately after delivery, or they delayed and then there wasn't enough blood left to donate/bank. Since the baby "took in" almost all of the blood from the cord when let be, this indicates to me that the baby did indeed have a need for that blood.

http://www.childbirthsolutions.com/articles/birth/thirdstage/index.php?ag=offScroll down to: The baby, the cord, and active management

If you are not going to delay clamping and the blood would end up in the garbage anyway, then donation does sound like wonderful idea.

[kindermom]

Delayed clamping...Very interesting. I had no idea.

[ebsbenhart7]

we banked ours.

[Scooter]

I just wanted to mention another option. Let your baby receive all of the valuable cord blood that they need at birth.
I believe strongly in the benefits of delayed cord clamping.
This is why we decided not to bank the cord blood as well. The blood in there is part of your baby's system, and if you let nature take its course, that blood will all be pumped back into your baby's body. It's another way to think of it, that you're donating your baby's blood rather than just some extra blood in the cord.

When I was researching this, I found out that it's getting more widespread among Drs to let the cord stop pulsing before cutting it--meaning there is no cord blood.

[cs5000]

Has anyone enrolled? If so who have you chosen and why?
I am trying to decide between Cord Blood Registry and Lifebank USA. They are both the same price, except Cord Blood has been around since 1992 and Lifebank has been around since 1998. Cord Blood cell recovery rate is 99.3%, Lifebanks is 81% recovery rate.

ANyone do research on them? they are both sending me info packets. I am wondering which people have chosen.

Thanks

[jesvet]

Here you go:

http://www.constantchatter.com/forum/showthread.php?t=2591

http://www.constantchatter.com/forum/showthread.php?t=3028

[jdevaz]

Quick question - We banked the cord blood for my DS when he was born 20 months ago. We are expecting our second child in 8 weeks. Would you bank for all of your children? I've searched the internet and can't find anything that details how beneficial it would be to bank for one vs. all of your children.
TIA!

[amew]

We banked the cord blood for my DS when he was born 20 months ago. We are expecting our second child in 8 weeks. Would you bank for all of your children?

We're actually donating, but if I was banking, I would bank for all kids. Given that autologous cord blood use (a child receiving a cord blood transplant using his/her own cord blood) is likely to be problematic in many situations, it seems to me that banked cord blood is most likely to be useful in the event that a sibling of the donor ends up needing a transplant. Since you can't predict which of your children might develop a disease that could be treated with cord blood, I would want to have all kids' cord blood banked. Otherwise, you run the risk of banking the cord blood of the child who becomes sick and not having the cord blood of the healthy child who might be an appropriate donor. Plus, it just seems to me that if you believe strongly enough in the potential utility to bank for one child, it's worth it to do it for everybody.

[jdevaz]

Thanks amew! That's what I was thinking.

[dizylizy]

I wanted to donate but I have what is considered by most Ins companies as an "auto immune" disorder. THus I was rejected (or thought I would be) so decided not to. I commend all of you for banking or donating. I wanted ours children's blood to be used to help others and research.

[PinkMartini]

Didn't bank (couldn't justify the cost vs. the benefits after research) and tried to donate but my hospital doesn't participate in donating cord blood...

[Rosebud]

Wanted to bump this up for some more opinions on the issue. We're having a tough time deciding whether to bank our baby's cord blood. There are some specific health issues in our family that make us want to err on the side of caution... but on the other hand it's SO expensive and all the reading we've done implies that cord blood hardly ever gets used. We're really torn.

[steviem]

I am, by no means, an expert on this topic, however, I wanted to share some input my bestfriend gave me when I was having my first baby 2 yrs ago. (She is in the healthcare industry specializing in marrow and blood banking and has had to go to classes specifically for cord blood banking):

Basically she told me that if money was no object, then, by all means, bank the cord blood because it can't hurt. HOWEVER, if money is an issue (because it can become costly to store the cord blood), then she would advise against it. She indicated that the banking of cord blood is NOT regulated by the FDA and/or government at this time and basically, not enough studies have been done to determine how long the cord blood can be stored, how good it will be after it has been stored for a number of years, etc.

In addition, she said that if you do decide to bank the cord blood, you need to do tons of research on the actual bank because there are tons of "pop-up" banks that open and close right away (taking your money and cord blood with them.) Again, this is partly due to the fact there is no governmental agency regulating cord blood banking as of yet.

Another point that she noted: For many diseases for which the cord blood may be used, depeding on your ethnic and racial make-up, it may make more sense to bank the cord blood . In dealing with leukemia, for example, there are very few Asian, Hispanic and African American people on the Bone Marrow Registry (donors), so, if you had to find a match, it would be much more difficult, then say for a Caucasian child. In this case, she said it may make sense to save the cord blood, again, as a "just in case," and if money was not an issue. This also goes for people who are of mixed racial/ethnic backgrounds (Hispanic/Asian, etc.).

I hope this helps but again, I am not an expert and perhaps some things could have changed in the past 2 yrs. It's always best to do your own research and maybe even ask your OB for his/her recommendation.

Good luck!

[Rosebud]

Thanks, steviem. Our OB basically said the same thing as your friend. We were leaning against banking just because of the expense... but then we started thinking about how the autoimmune disease my DH has puts our child at greater risk for developing something similar. DH's disease is one of the ones which has been specifically mentioned as benefiting from stem cell research. We're just wondering if future developments in that research would make us wish we'd banked the cord blood for our child. It's all so confusing.

[Suzlywoozly]

We went back and forth on whether or not to do it and we wound up doing it. My OB said everything that steviem mentioned above. Our decision was last minute... literally minutes before we were walking out the door to go to the hospital, CBR called us to see if we were interested. I told them that we were just leaving for the hospital and it would obviously be too late to do it since we didn't have a collection kit. The guy found one at another hospital and had it sent over to our hospital. My ultimate deciding factor was that they gave us a HUGE discount because my mom is a nurse. I think the whole thing was around $1200.00. Do you have any family members that are in the medical field? I bet if you call them really close to when you are due and mention that someone in your family is a nurse/doctor/etc you could probably get the same discount.

[LRL]

Suzlywoolzy- We are leaning towards banking, and the discount you mentioned seems great! Do you mind sharing what that included (how many years of banking, etc)? We will definitely be going with CBR, so I'd love to find out more.

[kindermom]

For those who are interested in donating, my hospital participated but it was $500 to donate, out of pocket. As a result, we were not able to afford it. It seems like such a waste that only people with extra cash can donate the cord blood.

[Suzlywoozly]

Suzlywoolzy- We are leaning towards banking, and the discount you mentioned seems great! Do you mind sharing what that included (how many years of banking, etc)? We will definitely be going with CBR, so I'd love to find out more.

Let me go find all my paperwork and I'll get back to you. :) I can't remember off the top of my head.

[alisong]

For those who are interested in donating, my hospital participated but it was $500 to donate, out of pocket. As a result, we were not able to afford it. It seems like such a waste that only people with extra cash can donate the cord blood.It was free for me to donate - not through my hospital. The organization (I'll try to remember the name) sent out all the supplies and a FedEx package to send it back in.

[Suzlywoozly]

LRL- Here's what my paper work says it includes...
* Collection kit, cell processing and storage
* 24/7 customer service
* Quality Service Guarantee
* Certificate of Deposit
* Medical Courier Fee - After you deliver the baby, you call them and they send someone to pick the cordblood up from you at the hospital.
* 1st year of storage. If you pay more than one year in advance, there is a discount.

We also took the interest free 6 month payment plan since it is much easier to pay a little at a time rather than all at once. I have to say that their customer service is awesome! Sometime during delivery all of our contracts were lost or thrown away. That night when I went to call the courier I panicked that I didn't have them to send with the cordblood. I called the 800 number and they had someone call me back within minutes. The guy told me not to worry about it and he would have the other guy who set up my account call me when I got home from the hospital. The day we got home he called to say congratulations and to let me know he sent out new contracts.

I noticed you are in the Bay Area... so am I. What hospital are you delivering at? CBR is located in San Bruno but they store the cordblood in Arizona.

[LRL]

Suzlywoozly- That's a really good price for that! Thanks for looking that up for me. I think we will be making a phone call within the next week!

I am delivering at Alta Bates in Berkeley- I know that they do general cord blood donation, but I would have to deliver between the hours of 9-3 in order to donate. It's ridiculous, and I wish that they would really consider how important the donation is. What a waste! At least they don't charge to donate though, that seems ludicrous! :eek:

LOL. They store the cord blood in Arizona? That seems like the last place someone would want to have something frozen! :p

[Suzlywoozly]

The price with the discount and the payment plan is what really sealed the deal for me. I don't know why but I really feel good about doing it now and there has to be a reason why they called us at the last minute and offered us such a good deal. Hopefully we never need to use it!

Yeah, I thought that was really funny that it is stored in Arizona. I asked the guy about it and there actually was a reason why it is stored there... don't ask me why because I can't remember now:p

[Lizard]

I looked into it seriously with DD, because DH's brother fought and won one of the diseases on the list (Acute myeloid leukemia). However after much discussion we decided not to do it. I wish I had thought about donating the blood.. the option wasn't offered to me.

With this baby I would like to do delayed cord clamping, so we won't be banking.

[mrst2b2003]

We are banking baby #2 cord blood. We didn't with baby #1 but I think there is a good chance that the stem cells could be used if either child gets sick. Much better than finding a bone marrow donor. We live in boston and are going with New England Cord Blood Bank.

[jenjunum]

We didn't collect cord blood. My DH works in stem cell research (mouse stem cells, but stem cells nonetheless) and he felt that the research was still too new to spend that much money when we don't have a lot of extra money for something like that. We both decided that the money would be better served in a college savings account rather than in cord blood banking. If money were not an issue we would have banked just in case.

[Pookie]

We banked DS's and have already signed up for DD's. We're going with the same company, but are using 2 different banks in different parts of the country to be safer.