Cord Blood Donation v. Cord Blood Banking

[LIZNKEITH]

I just read this article in U.S. News and felt compelled to share it here. Mods, I wasn't sure if this should go here, or in one of the Parenting Forums. Please feel free to move, if needed.

The Gift of a Cure (http://www.usnews.com/usnews/health/articles/070513/21cord.htm)

Plenty of parents-to-be have heard the pitch for banking their newborn's umbilical cord, in the event that the child might someday need it. Like the stem cells in bone marrow, cord-blood stem cells can give rise to any blood or immune cell; in addition, like embryonic stem cells, they have the potential to one day repair damaged tissue in the heart, say, or the brain. But children in need of a transplant can't typically benefit from their own cord blood-which is apt to carry the same genetic mutations that have caused the disease. So the real benefit of banking turns out to be the life-giving potential for somebody else. Congress, eager to build up a source of stem cells that doesn't destroy embryos, set aside $79 million 17 months ago to expand the collection of cord blood by public blood banks and launch a national electronic network to link the banks. And about half of the states have efforts in the works to encourage women to donate umbilical cords at local hospitals when they give birth.

David Harris, scientific director of Cord Blood Registry, a private storage bank with branches in San Bruno, Calif., and Tucson, Ariz., argues that the biggest benefit of private banking will come in the future, when researchers are able to grow a new liver or pancreas, say, out of a person's own cord stem cells. Many stem cell experts, though, believe these medical advances are years or decades into the future, if they occur at all. Meantime, of the 170,000 units collected by the company over the past 15 years, 50 have been withdrawn for treatments, says Harris. Twelve of these benefited the child who banked it.

I know as a parent I struggled back and forth on whether to bank DD's cord blood or donate it. In the end, we settled on donating. It infuriates me that these banking companies continue to play on the fears of parents and take thousands of dollars from unsuspecting families when it's being prooved that more often than not, banking their childs blood will not help...even if the child contracts one of the advertised illnesses!

I just wanted to take the opportunity again to bring awareness to Cyrobanks Cord Blood Donation program.

[ShannonGH]

Thanks Liz for posting and bringing more light to this subject. We intended on donating dd's blood but didn't/couldn't b/c of the Down syndrome diagnosis. We will be donating #2's if, God willing, he/she is a healthy child.

It is free to donate and relatively easy to do (just a few forms to complete). For those of you that are not banking, please consider donating.

[Emilie]

I gave it a lot of thought and finally have settled on a donation as well - from the company that takes donations at the hospital I am delivering at:

"If your child, your child's sibling or biological parent should need the donated stem cells for appropriate medical indications, we will provide the cord blood unit free of charge to you. If your donation has already been used for transplantation, StemCyte will try to obtain and make available the next most compatible unit in our inventory, provided it is acceptable to the transplant physician, also free of charge to you."

Seems like a win win situation to me - doesn't cost us anything, it could save someone's life and it could come back to help us possibly in the future.

ETA: The site we are donating through: http://www.stemcyteinc.com/donate/index.html

[HeatherFL]

Liz, you know this is so near and dear to my heart. Thank you for posting this! I would also encourage donation to anyone. Please do your research first, but know that it helps so many people! When I was treatment, friends I've met along the way were saved with cord blood!

~H.

[KK812]

Thank you so much for posting this, Liz. I don't have children but this is something I have thought about and it is good to know. Thank you, Emilie, for posting that company. I will make sure to donate to them or one like them when I have kids.

[LIZNKEITH]

Shannon,
Your DD is adorable! I didn't realize you were pregnant again. Congratulations!!

Emilie,
You're so lucky that your hospital accepts donations. I found out about Cryobanks through the WC and fortunately was able to go that route. As it was, my OB's office had never performed the procedure before so it was new to them as well. They were thrilled to be involved though and asked me for the information so they could pass it along to other patients if requested.
"If your child, your child's sibling or biological parent should need the donated stem cells for appropriate medical indications, we will provide the cord blood unit free of charge to you. If your donation has already been used for transplantation, StemCyte will try to obtain and make available the next most compatible unit in our inventory, provided it is acceptable to the transplant physician, also free of charge to you."

We were told the same thing by Cryobanks, though I've never seen it advertised. Hopefully it will never come to that, but it at least gives me some peace of mind. Either way, I'm happy to see it go to good use.

Heather,
It's sad that so many people are so unaware of this procedure...and how simple it is! Like someone else mentioned, it only involved a few forms and a few phones calls and that was it. As I watched the nurses collect the blood, I was filled with a feeling of elation that I was possibly giving the gift of life not once, but TWICE in one day. Pretty amazing...

KK812,
No problem. I really want people to be aware of how simple it is to do.

[MrsT]

We donated with Cryobanks (found out about on the WC too :) ) in our last pregnancy. My doc and hospital were pretty unfamiliar with it as well (Dallas suburb) but that was 2 years ago, so hopefully it has become easier (we really had to stay on top of the doc and hospital in order to get it done). Since doing it I saw a show on a little boy who had an immune disorder that prevented him from even going outside - with the stem cells from a cord blood donation he was able to eventually do just that (go outside and play) and become a more normal kid. Makes me definitely happy I did the donation route - becuase who knows if I would ever need the cord blood that I would pay to bank - this way the cells will hopefully find their way to the place most needed...

[Emilie]

Emilie,
You're so lucky that your hospital accepts donations.

I was beyond excited when I saw that my hospital does the donations. It was something I had to dig for but I am so glad I did and will hopefully be able to do this!

[RobynScott]

Thanks so much for posting this! I definitely am not into the idea of banking cord-blood. I saw a reference to donation one time and thought it sounded interesting - but didn't find out anything more. I will totally check out the site that was posted here and see if we can do it. I see no reason not to donate and every reason to do so.

Thanks for the post!

ETA - if anyone is interested in cord blood donation and they're not at one of the hospitals listed in the link above, you might find the following link useful: http://www.marrow.org/DONOR/Donation_Transplant_Process/The_Donation_Procedure/CB_Donation/index.html

Unfortunately for me, there don't seem to be any collecting hospitals in PA - I will keep looking into it.

[LIZNKEITH]

Robyn,
FYI- you don't necessarily have to be at a participating hospital. Unfortunately, there are only a handful in the U.S. that are. I actually donated at a non-participating hospital. It's just a matter of asking your OB in advance if it's something they are willing to do. My OB was thrilled to be involved and did not charge a collection fee since it was being collected for donation purposes. Other than that, I called Cryobanks when I checked in to the hospital (so they could arrange a courier to pick it up) & again shortly after DD was born (so that they could actually send the courier) and that was it. The nurses handled everything else from there.

[RobynScott]

Thanks for the info Liz! I'll check with my OB.

[jesseybell]

Last summer after doing our research and realizing that banking DD's blood for ourselves was really just a scam, we decided we wanted to look into donating. DH contacted Cryo on several occasions to get more information about donations and we never heard back from them. But of course we were hounded by mail, phone calls and e-mails from all the banks wanting us to sign up.
Next time around we will pursue donating even harder - we were just really discouraged by the fact that no one wanted to deal with us since we weren't going to be forking over any money.

[allyray231]

Liz that is great info! I wanted to donates DS but my hospital didn't participate!! Plus I had a c/s. But I hope when we decide to have number 2 we can do it

[ejs]

Liz that is great info! I wanted to donates DS but my hospital didn't participate!! Plus I had a c/s. But I hope when we decide to have number 2 we can do it

Having a c-section has nothing to do with cord blood being taken. Were you told it does?

[allyray231]

Having a c-section has nothing to do with cord blood being taken. Were you told it does?

No I wasn't! I just never asked (bad me!) Good to know though

[RobynScott]

For anyone else that is interested ... I just spoke with Cryobanks International - you can donate from any hospital - however, they need to receive your application no later than your 35th week (as long as they receive it before you turn 36 weeks you are ok) - and you need to have your drs. original signature on the consent as well. I'm glad I checked out their website b/c I am currently 34w2d so I don't have too much time to do it - but assuming my dr. has no problem with it (I'm not sure why she would) we'll be sending it in next week.

Maybe this should be moved to the parenting section so more expecting mommies have a chance to see it?

ETA - Jesseybell - I just spoke to Cryobanks Int'l and they told me I could just download the info off of their website.

[scout]

I'm glad to see this thread. When I wanted to donate my son's cord blood, my doctor had no idea what I was talking about. What a waste.

[LyLMyssChaos]

Thanks so much for posting this!
I was so disappointed to know that I wasn't a candidate for donating because of my own health problems, but I certainly tried. I think that a lot more people would donate if they knew how easy it could be.

[kazata]

Hmmm, you know I was initially a big fan of donating the cord blood, but I am also a fan of delaying clamping and cutting of the cord until it stops pulsating.

It hadn't occurred to me, but I was told that these two were basically incapitable - that if you delay clamping & cutting, then there won't be enough blood left in the cord to donate.

Just something to consider.....or does someone know whether this information is incorrect?

[LIZNKEITH]

Kazata,
From what I've read, you are correct: you can really only do one or the other. I think their are benefits to both options and it's up to you to decide what you feel will be more beneficial. Sadly, more often than not, neither of these options are chosen and that precious cord blood is just thrown away.

[HeatherFL]

Just wanted to share this link:

Cord Blood Information (http://www.charityguide.org/volunteer/fewhours/cord-blood-donation.htm)

[ADSigMel]

I'm so glad to have found this thread! It looks like a really good option for us, and I plan to talk to DH about it as soon as he gets home from work. As far as he doesn't have any problem with it, we'll be making a donation to Cryobank this summer! I was so touched by what Liz said about being able to give the gift of life twice in one day. Thought I'd post to bump this for anyone else who may be thinking about this issue right now.

[amew]

We tried to donate with Cryobanks and had no trouble with the paperwork or with getting the collection kit. But our sample ended up being too small to qualify for donation, and we had to throw it away. :( I was so bummed--I literally cried when I found out. My OB said that she always delays clamping and cutting a little, so maybe that's why.

[docoNY]

I have an OB appt on Monday - going to check w/my doc about this - I had seen a list of hospitals somewhere and thought my hospital had to be on the list - glad to hear it doesn't need to be!

[SpelKen]

Liz, if you're still checking can you tell me where you delivered at? I think you're in GA too. Was it ECL in downtown Atlanta?

[sabrespa]

We donated to Duke. What's nice is that they gave us contact info and if my son ever gets sick and needs a transplant we can check and see if they still have his cord blood and they will give it to him, free of charge.

[LIZNKEITH]

SpelKen,
I delivered at Piedmont Atlanta. It doesn't matter where you deliver though. Cryobanks will send a courier to pick up the blood.

I'm so glad to see so many people doing this. For some reason, we were denied for DD2. :( I filled out the forms, turned them in, and they replied back saying we didn't meet the criteria. Nothing on my application had changed since DD1's birth. :confused:

[ADSigMel]

Liz, that's weird that they wouldn't let you donate for Megan.

I went to the OB yesterday, and she signed off on all the paperwork to donate to Cryobanks. She hasn't done it much since she went into practice in the Birmingham area, but she did it a TON during her residency in Chicago at Northwestern. So she's plenty familiar with the process, which made me happy. She did say, though, that the last she heard, all the public banks were full and had stopped accepting donations. I guess I'll see what Cryobanks has to say when I send them my info. Hopefully they'll be able to accept our donation. I'd hate for those stem cells to go to waste, and I'm just not feeling the idea of private banking.

[LIZNKEITH]

Without further explanation, I can only assume they denied me for one of to reasons:
-I read an article recently that said there was a big need for minority cord blood and that they were meeting demand for caucasian blood. Maybe they're turning away caucasian blood to ensure room for any minority blood they receive?
-Or, since I've already banked my DD1's, the samples would be similar enough that DD2's wouldn't be unique enough.

I dunno. Since I was denied, I ended up doing delayed clamping this time around. I figured someone deserved the benefit of all those good stem cells.

[ADSigMel]

That's interesting you should mention that first point. When I talked to my OB about donation on Tuesday, she mentioned that the last she had heard, the public banks weren't accepting donations because they were full. I wonder if we'll run into this issue, since we are a minority-ish couple (I'm black, he's white and Middle Eastern).