Cord banking

 

Question from a real life friend of mine who lives in the US.  

 

Just a quick mail to ask…….. perhaps you could put a poll together or even ask opinions, not sure if you have ever covered the topic, but I would be interested to hear the feedback…. On Cord Blood Saving – is it a Must do, or Not.  Did you do it with your kids? Have you done much research on it??

My answer: I wanted to do it, but it is so damn expensive here in SA, that I couldn’t afford it.  

 

Any input from you guys?

 

 

Comments

[Samantha]

Very expensive in the USA. I opted for blood cord donation.

[Bridgette]

Another would have loved to, but too expensive.

[Cricket]

I did it 8.5 years ago. I am far from wealthy, but it was insurance that was more important to me than a college fund. I had to change from my gyn at 4 months when she refused to do the collection for me, so I got a midwife. I used Cord Blood Registry and was happy with their service, choosing them in part because they only do cord blood and also because they do research. They store for 10 years and we're coming upon the end of that. We haven't needed it, but it was there for he and the rest of the family if necessary.

[EJW]

I think it's a big scam. Here in the US, the advertisements try to make people feel like bad, irresponsibly parents if you don't do it. It's super expensive and the odds of needing it are so slim. Plus, cord blood is not always stored properly or even useful to treat leukemia or other cancers.

Should the time ever come, we'll donate cord blood, but not bank it.

[Erin]

As a scientist, I can tell you that the odds of needing that cord blood are exceptionally small. We didn't consider doing it for P. Aside from the money, it just didn't make sense medically. Plus, the blood in the umbilical cord is the baby's blood. The baby needs that blood. Studies have shown that when umbilical cords are clamped and cut quickly after birth (which they always are in donation cases), there's a much higher incidence of anemia, jaundice, and other problems. A recent study showed that preemies who received their cord blood by the cord not being cut until after it started pulsing had fewer problems and better responses to the treatments they received.

If she's really freaking out about it, tell her to look into public cord blood banks. They're usually free. The catch is that the blood is available to anyone who needs it. If someone else has the same blood markers as your child and needs it, they will get it. If not, it will be available for you when you need it.

[Amanda]

There was recently an article in Parent's magazine about this. Basically the consensus was that it isn't worth the high cost, unless you KNOW that someone in your family will likely need it. Sometimes it doesn't store well, there often isn't enough saved to use, and it isn't useful for many conditions. Check out the article, it was pretty good.

[Ashley]

I found this: http://www.msnbc.msn.com/id/4702857/ It was a very interesting article and made some excellent points. For instance, one company, Corcell, has been collecting for 7 years and has never shipped a unit of blood out for use. Another thing to think about is if your child is diagnosed with a genetic disease that can be treated with cord blood, their own blood will not be an option since it too would have the same genetic defect. In my opinion, cord blood donation is an excellent idea, but private companies are just in it for the money.

By the way, I have never commented before, but I HATE hearing about companies guilting parents into spending money they don't need to!

[Melissa]

My step-mother works at Core Blood in San Francisco. That company is great. They've been around for a long time, over 10 years. They have had people use it to save their kids life. But it's a personal choice. We did it with both our girls.

[abogada]

I thought about it, but it was too expensive, and the odds of our using it was too remote. I would have donated the cord blood, but there were no donation centers near us.

[Rachel]

To me, it's like gambling. There's about a .001 chance you're ever going to use it, but IF you need it, it could save your kid's life. I kind of agree with the "big scam" comment above.

[Renee]

I wasn't very interested in doing it, and thought it was a waste of money, but I think the issue struck a nerve with my husband. He insisted on doing it, and paid upfront for it. The cool thing is, we only ever have to do it once, as any little baby brother/sister that comes along can benefit from the blood. I agree, it is such a small chance that you will ever need it, but if that highly unlikely need should have raised it's ugly head, and we were not able to address it, I think I would have been very upset at myself. This is a personal decision, and honestly, it is like an insurance policy. You take it out, and pay hand over fist for it, all the while hoping to god you will never have to make a claim, but at least you know you have it in your back pocket.

[Nicole]

I donated my second child's cord blood. Donation wasn't available with my first child, and with my third child I was having too many complications to consider it.

Personally I don't think much of banking your own child's blood unless:
1. you already need it
2. you have or plan to have multiple children in a high-risk group for diseases that are treatable with cord blood (for example, certain ethnicities)

Also, I prefer donation because if I'm saving the blood for my 'just in case', but your child matched my child's cord blood and needed it NOW, I'd rather you have it. And that is only possible with donation.

And for anyone who is eligible and would be willing, you should consider signing up to be a marrow donor as well. Check for more info at www.marrow.org.

[Jenn]

I just finished researching this for myself. We will not be doing it.

1. It's expensive. And with twins, well, it's even more expensive.
2. The odds that they will actually need it are relatively small. We have no family history of any of the things that cord blood can currently be used for.
3. After looking at some stats, they had very few actual transfusions. So even the people that bank, no one was using it.
4. The promote it being used for leukemia, but if you have leukemia odds are you won't be able to use your own stem cells.
5. Usually the cord blood that was used was for a family member, not the child themselves.

I am considering donating to a cord blood bank. That seems like a good option to me. I think they try to make you feel guilty for not doing it, but after really looking long and hard at the facts, I don't believe it's worth it. It would have been quite a financial sacrifice to do it, but if I really thought it would be useful we would have found a way. I think the majority of it is advertising to pull on heart strings.

[Heather]

We're planning to donate the cord blood this time. Our state supports donations, and one of the storage companies will be collecting the result.

[Shamhat]

Keep in mind that that the cord blood companies boost their stats for actual use by giving free processing and storage to anyone who can document a family member who might actually be able use it due to a current illness.

Donation to a public bank makes sense; saving it privately is just silly. And in the US the cost for processing and a one year's storage is about the same as the HMO contract price for prenatal care and delivery. The kickback to the OB who talked you into it is usually around $500, plus whatever extra collection fee they charge.

[Robin (from TLOL)]

We were planning on donating (not banking) my second child's cord blood, but since she ended up being born in the back seat of my car in the hospital parking lot the "sterile conditions" the hospital required went out the window, err, car door, so to speak, so that was that.

[Erin]

I live in Canada and have both my children's cord blood banked. However, having said that the cost in Canada to bank cord blood is less then one third of the cost that I saw on U.S. sites.

We have a few inherited diseases in our family and I look at having the cord blood banked as insurance.

[Valerie]

Working in a bone marrow transplant center, and seeing the risks of illnesses all day long, I decided NOT to bank. The chances of needing it are so small, and the chances of being able to use cord blood for a transplant even smaller (most kids over the age of 12 are too big to use a cord blood transplant). Maybe, if I had a known genetic risk, I would have thought twice.

The odds are that if your child needed a cord blood match they would find one. Cord blood matches do not have to be a highly compatable as a marrow match since the stem cells from the cord blood are less developed and do not run the same risks for graft vs. host disease. It is much easier to find a cord blood match than a marrow match...there are just far fewer instances (due to size mostly) where they can be used.

[Valerie]

Just one more fyi...to Renee. It is not always true that the cord blood could be used for any other siblings. It is likely, given the "easier" compatability of cord blood, but not guaranteed. With marrow, a full sibling has a 25% chance of being compatable. With cord blood that is higher, but probably still closer to 50% than 100%.

[Kelly]

Should have done it...didn't because birth went wacky and collection kit was left at home.

I know there are naysayers, but stem cells are big things, and with a child who could be affected by stem cell research and it could be absolutely life changing for him, i wish we hadn't screwed it up. One never knows what it could be used for in the future.

By the way, there was no kickback for our OB because she didn't reccomend it.

[Kelly]

As far as cord blood vs letting the cord stop pulsing, you can still donate. Before my pregnancy and then birth went wacky, that was our plan and everyone agreed it would happens.

[ktcakes]

hmmm....we were told you can't donate after delayed cord cutting. Must look into that for this next one. We have opted for the delayed cutting except in my c-sec where we donated it.

[Sarah]

Same here. It was prohibitively expensive for me.

[Bethany]

Looks like you already have your answer, but I'll put my 2 cents in.

Banking is extremely expensive, and I've read, like Erin above said, that statistically it doesn't make sense.

I think it's a shame that advertisers make parents feel guilty when they can not afford or just don't choose to bank. What is a bigger shame is that so-called responsible parenting magazines allow these ads in their pages.

Donation wasn't around with my first, but I donated my younger daughter's cord blood. We didn't have any problems with the donation.

[Pink]

We donated to a public bank. I considered it very seriously as we have a strong family history of cancer. But when I checked with my cousin, who is not only an MD/PhD, but also a leukemia survivor, he said they hadn't banked their daughter's cord blood. I figured if he didn't do it, neither would we.

[Judy]

I asked my doc about this with #2...she had just had her second. She didn't do it, and in the umpteen kajillion babies she's delivered, she's only done a collection for banking for TWO. It is a wad of money that we just didn't have.

[wishIknew]

We did it because I really think the future of medicine will use stem cells more and more. Having both lost parents to cancer we were pulled emotionally to bank cord blood. There seem to be a lot of people posting negatively about it and based on what is known today they have good points about the chances of needing it today being slim. However, we felt it was something we wanted for medical treatments that have not become available yet but will be in the future. As I said, it was an emotional decision but also one we thought about in some detail and I still feel good about.

[wishIknew]

PS
Here is a link on Stem Cell Research

http://www.isscr.org/science/faq.htm#2

[Rhonda C]

I looked into it. The company I spoke to practically tried to guilt me into it. They were really trying to sell me on it and how necessary it is. All I know was when I said, "If this is such a necessity how can the poor get it done? Do you mean to tell me that this NECESSITY is only available to people who can afford it?" He was speechless and that was then end of that.

Sorry for the crap attitude.

[Celia]

Banking isn't available where I live, we couldn't even donate it, although that is changing now. I'm not sure we'd have banked our kids' cord blood (if we could have), but I would have dearly liked to donate it to someone who might. Seems a waste to chuck it out like that when it could save a life.

Have to agree with Rhonda about the cost thing. It's like certain drugs that can save lives - there's one available now which is doing good things with breast cancer - but only the rich can have it. So people die from not having access to a necessity, because they are poor. Sigh. It really does make one person's life worth more than another's in that case.

[badtigger]

I donated my first baby's cord blood, and wanted to do it again with my second. However, when I called the same donation bank, I was told they now have a federal grant that gives them quotas of certain ethnicities, and they had enough "white" cord blood for the time period I was delivering in. I was flabberghasted. I mean, they really couldn't take my cord blood because we're white? There was no other donation bank working out of my delivery hospital.

Anyway I went back and forth debating whether to pay for it or not. It was especially hard because we know this will be our last child - it's kind of now or never. And yes, it is very expensive, for the initial setup. There are many downsides. I just couldn't get away from the "what if" though. Another commenter mentioned that most saved cord blood is used for other relatives, not the child who the blood is from or siblings. But that's exactly why I wanted to save it...if my parents or my husbands parents get anything that could be treated with the stem cells and we hadn't saved it, well, I didn't want to look that lion in the mouth. So maybe we will feel silly 10 years down the road. I kind of hope we do. I would also be willing to add the blood to a databank for outside donation if it ever exists.

So sorry about the long winded reply, but it was an issue I really struggled with, and I just registered today with the bank. So it was a very timely question for me, and I wanted to share my thought process.

[Menita]

It's expensive. It's unlikely we will ever need it. But if there is a 0.01 chance that we might need it some day to save Polly's life, then, however unlikely, I want to have that chance. So we did it for Polly, and will be doing it again for Bingo. Because I don't know what I would do if 0.01 turned up and I hadn't done what I could...
Probably post-infertility paranoia has a lot to do with this, but hey, it gives us some peace of mind.

[Andy]

I donated my first son's cord blood. The only drawback was having to go back for blood tests (HIV, HepB) afterwards. When I was just about to have my second baby (after nearly 4 yrs ttc and IVF etc) I got a call from the blood bank saying that they had a patient who was a potential recipient for the blood. I felt like there was some sort of karma happening - medical science had helped me and now I could possibly help someone else.

[Judi]

I banked my son's cord blood. I look at it like insurance that I pray I never have to use. It was expensive but I was able to pay monthly so it became more manageable.

[Ute]

We didn't do it. After all, if you need the stem cells in order to cure some weird illness in your child, what's the point in using the hair of the mastiff? Those cells have the exact same genetic informatoin which probably caused the illness in the first place. If anything helps, it's someone else's cord blood, not your own.

Donating would have been an option for us, but our hospital didn't offer that.

[Kelly]

"After all, if you need the stem cells in order to cure some weird illness in your child, what's the point in using the hair of the mastiff? Those cells have the exact same genetic informatoin which probably caused the illness in the first place. If anything helps, it's someone else's cord blood, not your own."

For us? Well because my child doesn't have an illness, he has a brain injury. Which means stem cells might one day provide him the ability to regain that portion of his brain that is lost. Do I think its gonna happen for him? No probably not. Do I think cord blood would have been used? No probably not. But they are stem cells and I would have donated my banked cells in a hearbeat if they would have gotten us closer.

I am just saying what it can be used to treat today isn't the same thing as it can tommorrow. For those of us who have a child like mine, who this research is VERY important and the quicker it happens the more life changing it could be....it can be hard for us to get the naysayers.

Its not about guilt...its about thinking about the future. Its about evaluating the risks and benefits. For me? Yes every single stem cell banked and or donated is priceless. For you? Well obviously not...but then you probably don't have a child that stands to be affected.

[Suzie-Q.]

Stem cells are the future. Stem cells are our greatest possibility for a healthy human race. Stem cell research gives me hope, and, has the most incredible potential to affect civilization since computers and the internet.
This issue is larger than yourself.
I pray you all get that. I couldn't afford it, but, would have done it in a heartbeat. With twins it was impossible for me and i was not willing to make "Sopies' Choice" about which baby's blood to bank.
***Do it if you can afford it. You have nothing to lose and maybe something to gain. I think in a few more years stem cell research will make huge breakthroughs in curing diseases we don't know right now that our children will develop later...

[wishIknew]

Ok, I have to say one more thing since there are lots of comments about cost.
The initial fee is high - about $1700 (US) but compared to the 1000s we spent on fertility tests and treatments that's really not that much in my opinion. I guess it's all relative.

Then the yearly storage fee is $125.
There are a lot of things we buy for a few dollars that add up to that in a year (probably add up to more) Maybe you skip a fancy coffee drink, or wine out at a restaurant, or get your hair cut/colored less often, etc. You can come up with $125 pretty fast doing that.

Granted the initial fee is high but I don't think the yearly fee is that bad if you look at it compared to other things you spend $125 on in a year. Not trying to pick a fight or anything, just trying to put the cost in perspective.

Someday, I think they will be able to grow new tissues and perhaps even organs from stem cells. It may be a long time from now but I think we will get there some day.

[Melissa]

We banked our first child's cord blood, donated our second child's cord blood. My father died from leukemia and 5 of his first cousins have had other blood related diseases. Something is definitely brewing in the DNA. No one in my generation of the family or my kids generation has been diagnosed with anything at this time. There was no way I was going to take the chance of being told, "If only you banked the cord blood...". I don't think our decision was "silly". My husband and I thought long and hard about it. We work hard for our money, we spend it as we see fit.

[MamaChristy]

I did ity for my boy. I had a brother die of blood cancer when he was just a little guy - under the age of 12 where the blood isn't enough anymore. With a family history, I decided that despite the expense, it was worth it. I will spend the money on it again and hope that I never have to use either child's stored blood. Plus I don't know what treatments cord blood might be used for in the future and I want to make sure that my child has it available if he needs it.

I know the statistics that needing it is extraordinarily small. But if I needed it and someone said "Pay $3500 - the cost of collection and storage for 20 years - and we can fix your child" I would do it in a heartbeat. If I need it someday and hadn't done it, I could pay 100 times that and still have my child die. It's a really personal decision and you are justified no matter what decision you make.

I did quite a bit of research and made sure that the company I stored with had a research program that is looking into not only new uses, but ways to expand the blood so that it will be available for people over 120 pounds in the future. Ask lots of questions and then decide.

[LaurieC]

We donated our 2nd and 3rd child's cord blood. I think it makes more sense to donate than to bank. I read about it quite a bit, and I think donation makes more sense. ACOG and AAP both don't recommend banking. Also, the cost was definitely too much for us.

[Brooklyn Girl]

I didn't do it. I found the advertising for cord blood banking so agressive and unconvincing that it turned me off of it.

I hate planned to donate the cord blood to the hospital's public bank, but in the haste of the emergency c-section, we all forgot about those plans. Alas.

[Izabela]

I have heard that in case they need the cord blood, they never use your own. That is because it has the same genetic markers that caused the illness in the first place. So you never need your own, may as well contribute to a cord blood bank, because if you need it, you'll be using one of theirs.
That's my, probably only partly informed view.

[Kelly]

Again I want to point out, the importance of stem cells (even possibly cord blood) lies not just with disease but also with injury. So while it is possible the blood you bank might not be good for a stem cell transfer say for a blood disorder, it is possible that those cells could be valuable for spinal/brain/other injuries.

In stem cell research our greates improvment will be in that. Sure cancer is going to benefit, but because for so many cancers survival rate is already high, the big leap in treatment is likely NOT to be that.

Don't limit your mind to what we know now.

[allycat]

We initially thought we'd bank our daughter's cord blood, but after researching it we decided it wasn't worth it. Most diseases that are currently treated with stem cells are genetic, so the baby's own stem cells can't be used. There aren't enough stem cells available to treat an adult such as the mother or father. Currently stem cells are most useful for treating siblings, but there is only a 25% chance of a match among siblings vs. a 75% chance of finding a match in the public banks in the US. We may have felt differently if we had a family history of diseases this currently treats, but for us it felt like very overpriced insurance we were highly unlikely to use. I think donating to the public banks makes the most sense, but unfortunately there is no public bank where we live so that wasn't an option for us.

[Lauryan]

Here in South Africa, we only recently got our own facility for Stem Cell Storage. (check out www.lazaron.co.za). This was started by Mark Shuttleworth and his desire to make this available in SA.

Harvesting costs stand at R 7410.00 once off, and annual banking/storage fees are at R 136.80 per annum. That's not expensive for something that is already being utilised in assisting little ones (and their families) for over 40 dread diseases! Plus there are payment plans to pay this off over time.

I have done some research, and my feeling is that it's good insurance. You cannot say "But that will never happen to me".

We are expecting our first little one in December, and I am sure that we will do this.

South Africa has other companies that do this - but they still store overseas - my instinct would tell me that having the cells stored locally would lower initial and storage costs as well as decrease the time required to get the cells to where you are should you ever need them.

The process doesn't hurt the Mom, doesn't hurt baby. It can only be a good thing.

(MHO)