Cord Blood Banking

[MrsWhite]

Does anyone know what cord blood banking costs? Are any of you planning on doing this? I'm just wondering if the cost is worth it, given the chance that you will need it is pretty slim.

 

[ess]

Yes, we're doing it- my Brother did it for his baby and said it was a few thousand pounds- well worth it though They did loads of research but I can't remember which one they used- I'll ask them and let you know.

 

[lisaf]

The initial fee is pretty steep... not sure where you are, but around here it can easily run $2k ... and that may or may not include the doctor's fee to collect it.
Then there is the annual storage fee.

We simply can't afford it and unless we had reason to think we'd need it (family history or a child who had an illness) I wouldn't think it worth the cost to us. But thats just our circumstances and finances.
The blood is usually only usable by a relative/sibling... almost never for the child who it came from so if this is your only child you're planning on, it may not be worth it to you.

 

[Apen2009]

We saved the cord blood from our first baby and will do the same for this one as well. I actually don't recall the exact cost. The initial cost was somewhere around 2 thousand I believe. This covered the collection kit, courier transport from hospital to facility, initial processing (whatever that entails) and the first year of storage. This is also payable in installments so they make it pretty easy to afford. Once you get past that expense it's only $100 a year to maintain.
We looked at like any other insurance. You buy it and pray that you never need it. . .BUT if you do then it's an obvious fantastic investment.

 

[ess]

The blood is usually only usable by a relative/sibling... almost never for the child who it came from so if this is your only child you're planning on, it may not be worth it to you.[/QUOTE]

I don't think that's quite true, 'Almost never' - can I ask where you heard this?

This is what I found:-

Helping your child through private blood cord banking may be an unconventional means to secure your child's future. In fact, there are groups that protest the morality and question the ethics behind this practice. However, nobody can deny the fact that blood cord banking can protect your child in the future in case he acquires a life-threatening disease. Not only is it beneficial for your child, the cord blood can also be compatible to some members of your family who can also get sick. There is a big probability that the blood cord is compatible with a sibling if another child in your family is faced with a deathly illness. There is actually a 1:4 chance of a stem cell match between siblings. Blood cord banking can help your child get treatment for the following life-threatening illnesses: lymphoma, leukemia, Hodgkin's disease, breast cancer, aplastic anemia, sickle cell anemia, hereditary or genetic conditions, blood diseases, various other cancers, various immune system disorders, lupus, and so on.

 

[lisaf]

The blood is usually only usable by a relative/sibling... almost never for the child who it came from so if this is your only child you're planning on, it may not be worth it to you.

I don't think that's quite true, 'Almost never' - can I ask where you heard this?

This is what I found:-

Helping your child through private blood cord banking may be an unconventional means to secure your child's future. In fact, there are groups that protest the morality and question the ethics behind this practice. However, nobody can deny the fact that blood cord banking can protect your child in the future in case he acquires a life-threatening disease. Not only is it beneficial for your child, the cord blood can also be compatible to some members of your family who can also get sick. There is a big probability that the blood cord is compatible with a sibling if another child in your family is faced with a deathly illness. There is actually a 1:4 chance of a stem cell match between siblings. Blood cord banking can help your child get treatment for the following life-threatening illnesses: lymphoma, leukemia, Hodgkin's disease, breast cancer, aplastic anemia, sickle cell anemia, hereditary or genetic conditions, blood diseases, various other cancers, various immune system disorders, lupus, and so on.[/QUOTE]

This site has tons and tons of helpful data.
https://parentsguidecordblood.org/content/usa/medical/oddsofuse.shtml?navid=36
The charts down in number 4 and 5 on this page show you how much less self-use of cord blood there is.

Its also one of the most unbiased resources I've found. Its definitely pro-banking but does say that the cost of private banking is a real concern and encourages public banking whenever possible. The actual companies who advertise private banking use what I feel are unfair emotional appeals and project the possible number of disease that may be treatable in the future etc and make it feel like you HAVE to do it or else you're putting your child's health at risk. They list diseases that they hope may someday be treatable by cord blood... and thats good to know if you have that disease in your family, but its not a fact yet that its treatable, you know?

I cannot remember where I read everything, but I did read/hear once that the majority of cases where cord blood is needed, it is not effective at treating the child who the cord blood came from possibly because the same issues are there and it may simply buy them some time but won't be as effective of a cure as a sibling match from a sibling who does not have the disease. Sorry, wish I could find that data.

 

[Ember]

They are also researching other things it can treat, including MS which runs in my family from three different branches (grandma and grandpa both on my moms side, and the other half of my DNA had it...) so I would love to be able to do it but I don't think I can get my husband to agree to the cost. Every time I bring it up he just tells me it would just be another expense we can't afford. I am going to keep trying though...

Here is a link to a website lisa shared I think yesterday when someone asked about donating cord blood. I read the info on every bank in the US, but they have listings for lots of other countries too if you're not from the US.
https://parentsguidecordblood.org/content/usa/banklists/listusa.shtml?navid=16


EDIT: Haha I took too long posting it, and she's already reposted it lol!

 

[lisaf]

Ember - could you see about donating for research towards MS?

 

[Ember]

I have been thinking about it. I would really like to have it privately banked, but if I can't talk him into it, I am going to try to find a way to have it donated.

I also saw on the site that there are some companies researching using the whole placenta, too. They say they can get a lot more from using the placenta in addition to the cord. It costs extra, though. There is even a company listed that banks stem cells from menstrual blood, which I didn't even know they could use!

 

[lisaf]

whoah... now that would be crazy if they could use menstrual blood for treatment!

I wish it was easier and cheaper to donate.... I would rather donate my blood and KNOW it could be used for someone than privately bank, maybe maybe need it for my own family but meanwhile someone else suffers or dies etc.... and if my own family needed it, I'd hope that someone else had donated etc.
I just wish there was a better way to handle the whole issue.

 

[Ember]

Wouldn't it be a great world if cord blood banking (public) were as commonplace as organ donation? When an organ donor dies, they check the registry to see if they're a match for anyone that needs something they have. It would be nice if, when a baby is born, they take the cord blood automatically and check it against a similar registry. How great would that be? Then we would all have a better chance of being able to be treated!

 

[MrsWhite]

Thank you all for your answers. I had read that there is a public option, which is free, but that if your child needed it there was a chance that someone else already used it and you're out of luck. I am planning on having more than one child, and I'm not necessarily worried about the child being born with a problem, but my dad has non-hodgkins lymphoma, which is under control at the moment but I fear there may be a day when he needs a stem cell transplant. I do not even know that my child would be compatible with my dad since it's pretty far removed ( I know siblings are the best chance at a match), but I guess the whole idea that it can happen to any of us really hits home and I think it'd be nice to be able to do that for our child just in case, but it is really expensive. But then when you think about it, if we needed it that is a small price to pay.

 

[lisaf]

MrsWhite - in cases like yours where there is a known condition in the family, I think its definitely worth it. And for someone who can afford to bank privately even if you don't know of a need, I say more power to you! I just hate to see people who can't afford it get pressured into feeling like they have to find the money somewhere to do it.

There is a bank in Los Angeles, CA that I was just reading has a public/private option... where you can bank privately, but pay an extra $250 to have the option of making it public. You must keep it privately stored for 10 years and after that it can be offered to the public. If it is used for a transplant for a public recipient, you get some of the money back. It sounds like a neat option but that extra $250 up front is kind of a bummer.

I did find one of the sources that lists the limited chance for use by the child the blood was taken from:

parents should know that a child's own cord blood (stored at birth), would rarely be suitable for a transplant today. It could not be used at present to treat genetic diseases, for example, because the cord blood stem cells carry the same affected genes and. if transplanted, would confer the same condition to the recipient. (See the story of Anthony Dones.) In addition, most transplant physicians would not use a child's own cord blood to treat leukemia. There are two reasons why the child’s own cord blood is not safe as a transplant source. First, in most cases of childhood leukemia, cells carrying the leukemic mutation are already present at birth and can be demonstrated in the cord blood. Thus, pre-leukemic cells may be given back with the transplant, since there is no effective way to remove them (purge) today. Second, in a child with leukemia, the immune system has already failed to prevent leukemia. Since cord blood from the same child re-establishes the child's own immune system, doctors fear it would have a poor anti-leukemia effect.

source:https://www.nationalcordbloodprogram.org/donation/public_vs_private_donation.html

 

[lisaf]

oh, and from that same site I just quoted:

For these and other reasons, the American Academy of Pediatrics (AAP) and many physicians do not recommend private cord blood banking except as “directed donations” in cases where a family member already has a current need or a very high potential risk of needing a bone marrow transplant. In all other cases, the AAP has declared the use of cord blood as "biological insurance" to be "unwise."

Just an FYI of the AAP's opinion on it when there is no known need. Just basically backs up what I said above about the probability for need vs. just doing it. But if you can afford it, its your money to spend how you want and there's nothing wrong with choosing to bank the blood.

 

[Ember]

Wow, I am glad to know all of that info. I think it's actually persuaded me to just go for public banking anyway.

And I just got off the phone with my best friend, she told me that the doctor took her daughter's cord blood when she was born on the 6th. She doesn't remember ever even signing anything consenting to it, not that she would have refused had they asked, but found it pretty interesting that they just went ahead and took it. So maybe that dream of mine is already becoming reality and we just don't know it yet?

 

[lisaf]

well, I did realize that site I just quoted twice is actually a public bank... so of course its data is going to be biased against private banking, though its sources/quotes seem reputable.

That public bank operates out of many hospitals in NY it seems and a few others?
They do have a consent form that is signed etc and the mother is asked if she wants to donate for transplants, research or have it discarded.
They did say that they only succeed in getting enough cord blood for transplant 40% of the time. I had heard that private banks don't have the same restrictions with quantity and will take it, store it etc and charge you... but I do wonder if it would be considered usable if you needed it if the quantity wasn't up to the volume the standard public banks want.

I peeked at a site that does private storage of the cells from the placenta... and the benefits of transplant improve with the more units you have I guess? However, the fee to bank cord blood plus placenta cells was over $3k! Crazy!
I looked at some of the payment plans... you can do cord blood interest free for a year at over $200 a month or finance it over 5 years at $44/month Yuck!

 

[Ember]

Yeah, it looks pretty expensive. I did see a lot of them with varying payment plans. Some of them are interest-free.

I've confused myself now after looking at that site some more in regards to public banking. It says that only participating hospitals collect for public banking. It doesn't give a lot of info on donating it for research though, but I'm guessing that the doctor took the cord blood for research donation and not public banking donation...

 

[shiner]

One thing you need to consider is that the research into the possibilities of uses for cord blood is in the very early stages. There are some AMAZING and wonderful things that can be done now using the cord blood, but what we are seeing is only the very beginning. In the coming years who knows what we will be able to do. And, you won't get to go back in time and change your decision. The benefits will not be limited to siblings, but also the parents or other genetically similar individuals. When you look at this issue you need to keep in mind that every month or two there is another thing they can do with the blood.

We haven't completely decided ourselves, since people of our ethnicity have something like an 85% chance at finding a public match. It is the unknown benefits that will come in the next decade that really catch our interest.

 

[1sttimemama2b]

We're doing the public banking option. Can't afford private.