Ask Slashdot: Store Umbilical Cord Blood — and If So, Where?

gambit3 writes "My wife and I are expecting our first child in 3 months, and one of the decisions we still have to make is whether to store our baby's cord blood. Even if we decide the upfront cost is worth it, there is still the question of using a public bank or a private one (and which one to trust), and whether to also store umbilical cord tissue for stem cells. Does you have any experience or suggestions?"

CBR is the one I used

[Zondar]

I think their website is www.cordblood.com

You pay an up-front fee for the collection and first year storage, and a smaller fee each year for storage.

I'm also interested on this answer

[martiniturbide]

I used Cryo-cell, since they provide this service in Ecuador. As a company it seems very serious and active, but I had never used the stored cells. I really don't know how well the company will respond once you need it.

It's a personal decision, but consider donation

[Anonymous Coward]

http://marrow.org/Get_Involved/Donate_Cord_Blood/Donate_Cord_Blood.aspx

ViaCord

[jcaldwel]

My son was born a little over a year ago, and I selected ViaCord [viacord.com] as a cord blood bank. We evaluated a few, and they seemed to be more competent than other options. It's important to get the "collection kit" up front, and have it with you in the hospital... at least in my case, the hospital does not provide any of the supplies. Also, your wife will need to make sure that the OB/GYN is aware ahead of time about your decision to store the blood.

Re:People do this?

[who_stole_my_kidneys]

I actually just saw a special about this, it has something to do with stem cells and if there is a issue later in life, the blood can be used as treatment, much better than donor blood and 100% compatible (because it their own blood)

We used ViaCord

[Doofus]

We used ViaCord [viacord.com] for our first, and will be using them for our second. Similar to other services, you pay a collection fee (blood approx $1500, blood+tissue approx $2700) and then a small annual fee for storage.

It remains unclear to me that cord-tissue preservation will be worth the gamble; the option wasn't available several years ago for our first, but is now. We are debating about whether the extra cost is worthwhile, considering no studies have demonstrated effective therapies using cryo-preserved cord tissue.

Your mileage may vary.

Enjoy the adventure with the new one.

Unless you're rich, don't bother

[sweatyboatman]

The cord blood banking industry is right on the border between speculative medicine and outright scam. It's insanely profitable, which is why every doctor's office is littered with pamphlets for competing cord blood banks.

There's a vanishingly small likelihood that your child will have some otherwise untreatable disease that the cord blood will help with. Most of the things they say cord blood can help with (like genetic defects) actually wont help your child, since the cord blood has the same faulty genetics. The banks also tout the potential for cord blood use in future therapies. However, it's likely that any treatment that uses cord blood would be just as effective using stem cells.

So what are you banking, in this case? I have no idea. The cord blood might be helpful for your next child, I guess.

Another thing to keep in mind is in order to harvest the cord blood, you have to cut the cord before it stops pulsating (that is, before all the blood in the cord has reached the baby). There's a growing body of evidence that your baby benefits from this blood, and the cord should be left intact. So banking your baby's cord blood may actually harm your child. Of course, whatever the effect it's unlikely life threatening, but it does seem unnecessary.

Re:Drink it

[Gripp]

do NOT click that link.. some things you can't un-see. ... :( you've been warned.

We thought about it.... and elected to 'donate' it

[gus goose]

... for both our kids. We decided to 'donate' the cord blood (was free, and then you get 'preferential' access later if you happen to need some from the 'bank' later).

Turns out our kids were both born on Sunday evenings, and they do not collect blood on Sundays.....

Now I read all sorts of things about keeping the umbilical cord 'whole' for longer helps with anaemia... i.e. letting the cord 'drain' for longer is better for the baby. There's debate about how long the draining should take, but, it precludes the donation of the core blood.

If I were to be doing it again (and I'm not planning to...), I would talk with the O/B and delay the cutting of the cord for a few more minutes, and then forgo the donation of the blood entirely.

The prospects of tangible short-term benefits far outweighs the unlikely need for obscure treatments at some uncertain point in the future from some company that may or may not be around when you need them, and they may or may not have destroyed your tissues anyway, for a condition that may (at that time) be curable without cord blood anyway.

gus

Public over private

[juz]

We looked into this for our first kid. My wife is an anesthesiologist so has some idea about this. What we found (at least for Australia in 2006) was: - a public bank service is better than storing an individual's blood. Stem cells are exciting medically because they don't have the same sorts of matching requirements that blood and organs do - there were trust issues withe private operators

Let the baby keep it, he/she needs it

[beberly37]

When a baby is born, blood continues to flow through the cord for a while giving the baby much needed nutrients. It is common practice for midwifes. Baby comes out, goes straight to mama's bare chest for skin-to-skin heat transfer and up-close pheromones (leaving the naturally protective goo). In a minute or so the chord goes from bright full-of-blood colored to dull gray and empty and it no longer pulses. Clamp and cut the chord then. We did this with our now 7 month old, she was back up to birth weight at the three day check up.

Re:People do this?

[jandrese]

Basically, if some stem cell research pans out then you might need some of your own stem cells later in life to actually use it. While there is currently no use for cord blood, the thinking is that in 60 years it might be really useful, and that's when your kid may need it. It's impossible to say what new medical procedures will be available in 60 years, so the whole thing is a gamble. Heck, even if the medical procedures pan out, they may not have a good way of reversing the freezing damage on the cells.

It's something for optimists with some extra disposable income. There are some pretty sketchy looking cord blood companies out there however, so do your research. Since nobody is making withdrawals from these banks yet, it's hard to tell which ones are real and which ones are scams/incompetent.

Re:People do this?

[Derkec]

I believe Cord stem cells are rather "pure" stem cells that are very undifferentiated. Making them ideal for a handful of medical procedures and unspecified future medical procedures that may be created. Generally, this nifty resource is lost right after birth (it's thrown away). So some companies have been created to store them, and provide them to you (or others if donated) in the case one of those rare procedures is required.

If I recall correctly, you're looking at $500-$1000 to get things going, and a 50-100 annual fee to maintain. This falls under the broader cateogory of stuff sold under the banner of, "You love your baby right? You'd do anything to protect it? Right? You're not a callous evil person."

Re:CBR is the one I used

[Anonymous Coward]

We used CBR as well. They used to have a program where you could pay for 18 years up front (pricey, but paid off for a while). I did a very small amount of research, and CBR seemed "big enough" to trust to be in business years from now.

As someone mentioned earlier - donation is cheaper (or free). I was thinking that route, but we have a medical issues in the family so it might come in handy in the future (never know what they might use it for in the future).

Re:People do this?

[jandrese]

Yeah, I personally group those companies down with the "freeze your body and in 100 years they'll have the cures for old age and for freezing and you'll be revived in the future!" places. The advantage is that since you're paying them year after year they will have the operating budget to actually keep running long enough to be useful, unlike those body places that typically run out of money and then just dump the bodies out back. You have to be outrageously optimistic to think that it will pan out though.

Re:CBR is the one I used

[DragonTHC]

we used CBR for both our children. It's $1800 for collection and the first year.

each year is $125 or you could pay off all 18 years up front.

Re:People do this?

[compro01]

No, in fact, your cord blood will be irretrievably damaged after a couple years in the freezer.

Depends on how you define "a couple years". According to Canadian Blood Services (who run the Canadian public cord blood bank), cord blood stem cell transplants after 13 years of storage showed no deterioration in efficacy, though longer term data isn't available yet.

Re:Public

[Reapy]

If we knew we could have donated at no cost and someone could have used it, my wife and I most likely would have done so. To me the whole thing seemed sort of like a big rip off, or something I'd do if I had excess money laying around. They like to gouge you for a lot of stuff involving your kids, its easy to whip people up into a panic about doing EVERYTHING YOU POSSIBLY CAN TO PREVENT EVERYTHING.

Either way it feels a shame that it could have been used to help someone instead of it ending up as a puddle on the floor. I guess part of the reason I didn't save it is that there wasn't an urge to collect it if we weren't going to ourselves. If it was that precious hospitals would most likely not let it go to waste.

Re:CBR is the one I used

[Defenestrar]

Note that: "Our state-of-the-art technology is backed by a $50,000 quality service guarantee that your baby's stem cells will engraft if they are ever needed for transplant."

However the number of likely candidates for cord blood treatment is extremely small (pretty much all experimental and not FDA approved these days). Crop the number of bank withdraws they're likely to receive (very few) by the price they charge per deposit (roughly $2k), and that's not much of a guarantee by the measure of mouth-where-the-money-is. Now if that's a measure of their confidence for a life saving treatment... you might want to double think.

Secondly, there isn't a single word in their FAQ about the repository technology they are using. Are they storing the cells in -80 freezers or in LN2? What are the stats on half-life and other successful viability studies? Where are the links to successful case studies of cord blood stem cell treatment? They have research links, but most are either still animal studies or non-cord stem cell therapies.

The point is, they might have a great thing here, but at the moment they're selling vaporware. Sure, it may eventually come out just like Duke Nukem Forever, but it may not be released in time for your child. There's plenty of evidence that most of the stem-cell treatments out there are possible with donor registries (e.g. like bone marrow) or even adult tissue (not even stem cells - I was just at a conference last week where I saw a video of a modified inkjet print out a heart seeded with a patients own heart tissue). The fliers these type of businesses get the hospital and OB/GYN to hand out has a core message of: "it'll be your fault if your baby gets sick and dies if you don't give us a lot of money right now." It's surrounded by fluffy baby graphic design, but their business model should raise a few ethical eyebrows.

Of course who knows - they might be right. Maybe someone will someday invent a way to use cord blood with today's harvesting techniques (note that the FAQ doesn't say anything about sample freezing until it's already been through the mail) and your baby will die without it... no pressure, right?

Now on the flip side, I do know people in the repository business and they think this sort of thing has potential to work, but there's already plenty of argument to that effect around here today - so I thought I'd point out the other questions which should be asked.

Donate it, do not store it

[MobyDisk]

Do not pay to store your own cord blood:
1) You cannot use your own stem cells any current stem cell therapies. If you have a genetic condition that can be solved with stem cells, you must use cells that do not have the condition. But someone else could use them. It is more likely that you will use someone else's stem cells. The only reason to use your own is in the theoretical future where you can regrow an organ.
2) It is more likely that someone else will need those stem cells. Paying to have it held for you denies someone else a potentially lifesaving therapy. Imagine paying a company to store your own blood in case you needed it after an accident/surgery. Better to bank it for anyone to use.
3) Donating the cord blood for anyone to use is free.
4) Many of the companies that offer umbilical cord blood banking prey on people's fears and operate in unethical ways. Organizations such as the American Academy of Pediatrics have called-out specific companies for questionable behavior.

Many hospitals and birthing centers promote cord blood banking because they are convinced by salespeople that it is a smart thing to do. But they often don't know much about it. Do some reading on this before making a decision. Often times doctors give advice about medical treatments that they are not trained on. (Ex: Don't ask an OB/GYN about stem cell procedures any more than you would ask a licensed electrician about a plumbing problem, or a criminal lawyer about copyright law.)

Start with the Wikipedia article: [wikipedia.org]