The truth about cord blood banking
tokenhoser
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https://articles.lucieslist.com/truths-about-cord-blood-banking
The Truth About Cord Blood Banking
The pamphlets are everywhere: at your doctor's office, at the maternity store, in your mailbox, in the magazines... all over the place. And a coupon for $500 off, sweet! Who doesn't love saving money?
The Message
The message is clear: pay a couple thousand dollars now to preserve your baby's cord blood so that when he is (inevitably) diagnosed with leukemia, you can snap your fingers, inject him with the cord blood that you so meticulously preserved, and voila! Cancer cured. Everyone's happy.
Choose not to save the cord blood and your kid will die because you were a cheapskate a$$hole who doesn't care about the wellbeing of her child.
You love your baby, don't you???
Not surprisingly, the emotional pitch is working. The numbers of families privately banking cord blood has drastically increased since the early 2000's. And at $3,000-$4,000 a pop over the course of 18 years, it's BIG business $$$$$
I'm not trying to talk you OUT of doing it (per se), but I want to share some little known facts that I've recently learned after talking to experts and reading LOTS of research.
I am lucky enough to live in San Francisco, which is where a lot of this research takes place. I was able to interview people who personally work on these projects and are in the know, but a lot of my quotes came from this article from 2005 published in the SF Chronicle. [Yes, I know it's years old, but none of the salient facts have changed.]
There are a lot of key points that the private banking companies DON'T tell you about. Let's call them "marketing omissions", shall we?1. Bad Blood
The blood from a sick child would probably not be used to treat that child.
Children who develop a disorder often are unable to use their own cord blood because the blood also contains the same genetic defect. In fact, nearly all of the transplants that have occurred to date using privately banked cord blood have gone to relatives with pre-existing conditions, not to the donors themselves.
Oh.
Dr. Joanne Kurtzberg, director of the pediatric blood and marrow transplant program at Duke University Medical Center, agrees: "in children with cancer, I would definitely not use a child's own cord blood because it was probably contaminated with the disease at birth."
Hmmm. They don't mention THAT in the brochures. Onward.
2. "There ain't enuff"
When they draw the cord blood from a newborn, it's really not a lot of blood.
The idea that "we don't have many applications for cord blood now, but in 20+ years, we might be able to fix your child's heart, cure his Alzheimer's, etc" is busted because there's probably not enough blood for an adult transfusion.
"Approximately 75 % of the units donated to public banks are discarded or used in research because they don't contain enough stem cells for transplants", says Mary Halet, manager of cord-blood operations for the Center for Cord Blood at the National Marrow Donor Program.
Dr. Kurtzberg agrees, "few cord-blood transplants have been given to adults because most units haven't contained enough stem cells to treat anyone weighing more than 90 pounds". It may not even be enough for a child.
The truth is that the majority of all cord blood stored in private banks may be unusable for this reason.
Oh that. Tee-hee.
3. Go Public or Go Home
For a full sibling, there is only a 25% chance of a perfect match. For a parent or other relative, it's even less likely. This is why public banking is important. In fact, from 2000 to 2004, more than 2,200 unrelated transplants were done nationwide from public donations.
The AAP (American Academy of Pediatrics) encourages families to donate their newborn's cord blood, which is normally discarded at birth, to cord blood banks (if accessible in their area) for other individuals in need.
Find donation locations here (choose your state from the drop-down menu).
Ok, so does that mean you shouldn't do it? It's really up to you, but here are the arguments...
The Argument FOR
"The potential for use is very small right now but could be very great in the future," said Dr. Michael Trigg, who chairs Cryo-Cell's medical and scientific advisory board.
Okay, at least he's honest.
Also, you may be a better candidate if one of these two is true:
1. A known illness: When an immediate family member has a disease that requires a stem cell transplant, it would seem logical to privately bank your baby's cord blood as an extra weapon in your arsenal (will it "work"? who knows). You should definitely discuss this with the ill person's oncologist or hematologist.2. You are a rare species: It's a known fact that ethnically diverse babies may have a harder time finding a public match than say, a bunch of whiteys. If you are an Irish/Inuit married to a Polynesian/Brazilian (for example), I'd suspect your babe's blood would be a better candidate for private banking than the average bear.
The Argument AGAINST
In response to the tremendous marketing surge from cord blood companies, the American Academy of Pediatrics came out with a statement,
Read also the position statement from ACOG."The AAP discourages storing cord blood at private banks for later personal or family use as a general "insurance policy"." Read the full statement here.
Other experts agree, "these banks prey on parents' fears of the unknown, and there's no scientific basis for a number of medical claims they make," says Bertram Lubin, MD, a blood specialist and president and director of medical research for Children's Hospital Oakland Research Institute, "most of the people in the hematology community think they're a bunch of snake-oil salesmen in these private companies." Ouch.
One mom told me, "I asked about 15 GYNs about it, and could not find one that advised it. In fact, one of them said to take the money and put it in the college fund. Ha!"
The Bottom Line
In summary, it's safe to say that it's not going to HURT to privately bank your baby's cord blood, but you need to understand what you are actually getting for your money. A fail-safe insurance policy? Most definitely not. You are getting the promise of a "maybe", at best.
Also, make sure you understand the motivations behind the people that are peddling the pamphlets; they're getting paid a lot of money in referral fees (et tu Motherhood??).
Again, the right answer is the one that you and your family feel good about (blah, blah, blah).
I'm done now.
Re: The truth about cord blood banking
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I still think it is worth it and we will do it again. Who knows what cord blood can be used for 10 years from now? I am on baby #3, who knows what my first child's cord blood can do for one of her siblings or vice versa? They are doing research all the time, things change a lot, there is so much that is unknown.
A lot of people don't ever have to use their car insurance to file a claim but they still pay for it just in case. I look at this as the same thing. I hope to never use it, but if I need it, I will be hella happy I did this if it gives my kid a chance.
What if that ONE person you talked out of doing it and it could have saved someone in their family's life?
ETA: I didn't mean to click into 3rd tri, sorry! Not trying to sound bittchy before I'm even really "here".
As long as you're aware of what a long shot the uses are--that even if the situation did arise that cord blood could be used, for your child, for his or her condition, and he or she could use his or her own cord blood, there might not even be enough to make a difference--and you're comfortable with that, I think it's fine. It's a personal choice. But so many of these companies really do make it sound like you're being a horrid parent taking your child's health for granted if you don't privately bank cord blood--and that's not true at all. I'm also tired of seeing "look into cord blood banking" on every "new parent" checklist, as though this is something *every* parent *needs* to do.
Careful with counting on research to provide uses down the road--as the article said, even if it did provide a use that doesn't exist now, the small amount of blood you banked is unlikely to be enough to make a difference for your child. Not saying it's not a consideration to think about currently untapped uses, but just something to be aware of.
Seriously? This PISSES me off. Who the hell is anyone to try and "talk people out of it." No s*hit it isn't an insurance policy where I will snap my fingers and everything will be fine.
But has anyone in your immediate family ever had one of the diseases that this has been used to treat? DH is a stage 4 hodgkin's lymphoma survivor. You better DAMN well believe that I will do everything in my power to have whatever amunition I can to fight if that should come back or if either me or either of my DDs has an issue in the future for which this can be used for. I have asked numerous doctor's if they would bank in our situation - and all of them said "if you can afford it, in your situation, I would do it in a heartbeat."
It is just one more thing I can do to fght for my family. It's expensive - but you know what? If I can afford it I would rather spend my money on this than on a fancy vacation or something similar.
I only pray that it is the worst investment I have ever made and that it is the largest sum of money I ever spend on something that I never have to use.
So, it has never done ANYONE EVER and never will do ANYONE any good? I really, REALLY hope you have your MD to make a statement like this. Do you?
Exactly this! I did it with dd #1 and I will do it again! I hope to hell I never need it and it is money that is wasted. But if I ever do need it and advancements have been made...well then I may win the lottery. Worth the risk of my money in every way.
"Just keep swimming, just keep swimming..."
I think the information provided is great, but your intentions for providing it were off.
It is a long shot and anyone who is going to spend the money does need to know all of this, but to post this to talk people out of it and to say it won't help anyone is not right.
It has helped some and may help some in the future. I agree that a parent should not feel bad if they don't do it. We donated with DD and will again. We flat out don't have the money. If we did, we would bank it in a heartbeat. Why not have that possible backup if you can afford it.
The bottom line is, it is everyones personal decision to make and no one should try to talk you into it or out of it.
The companies spend millions trying to guilt trip you into it.
The only doctors that will tell you to do it get a kickback if you do.
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Read also the position statement from ACOG."
So neither the AAP or the ACOG thinks it's a good idea. I hear there are some doctors in those organizations.
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I agree with this. I am glad to see the other sided bc I was feeling like a horrible mom knowing we could not afford to bank it and will definately look into donating it!!!
Yeah. Again, No. Our OB was one of the people that I asked. We didn't even go with the company that has pamphlets in their office. We went with the other one. She did not promote one at all - I just happened to see the pamphlet in the waiting room. So, yeah, no kickbacks for her from me.
You have like some serious almost anger at this topic. If I can afford it AND HAVE A MEDICAL HISTORY that makes sense for us to do it - no one is guilt tripping me. I am a very educated woman making an educated decison. So our others on this board. Stop trying to make US feel bad about doing this just because you have some pent up agression about banking. It's like you are trying to guilt trip people in to NOT banking.....WTF?
If you read the entire OP, she said that if you have a family member with a known condition, such as lymphoma, cord blood banking would be a good idea for you. You are arguing against nothing. An educated decision based on a known medical condition is different than making an emotion based decision because of marketing techniques.
Honestly, in this post she isn't the one that sounds angry. You sound really worked up. The problem is not the banking itself, it's the misleading marketing driven by people who stand to make a massive profit off of something that is statistically unlikely to help the majority of their consumers. If you have decided it's what's best for your family, great. But there is absolutely nothing wrong with informing people about the current problems that exist with cord blood banking.
I am actually far from ignorant on any of this, but thanks so much for the judgment. I realize 100% that doctors get kickbacks from all this crap. I am a health care attorney for Christ's sake. I was speaking about my own personal experience. My husband also asked his oncologist - who also said if we could afford it, we should. He has no affiliation with cord blood banks. I did not appreciate the way the OP made it sound as if anyone who did this was completely throwing their money away and was basically an idiot for banking (e.g. her it will never benefit anyone, ever statement, which is just not true). People have their reasons to do it, which, yes IS what the article said (yes, PP, I did read the entire thing) but is NOT what the PP was saying. Maybe the industry makes people feel bad for not doing it, but I don't need someone making me (and others) feel bad and well, stupid, for doing it.
Of course not! With this I completely agree. All I am trying to say is just that I would never make any family feel bad about not banking, I don't need someone trying to make me feel bad and stupid for doing so. It works both ways. There should be no judgment on this topic at all.
Only one person in this informative, relevant, and accurate post sounds angry.
Dude, if you have the advice of an oncologist about your situation and you have the thousands of dollars to do it, go nuts.
The rest of us? We need to not feel guilt induced by companies that are ultimately for-profit endeavours. They create the guilt to separate parents from money and that's really the core of the industry.
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This.
I agree, if you can afford it, do it. If you don't agree with it, don't do it. I have a good friend from High school who is currently in the process of trying to harvest her stem cells. This is her second battle with Hodgkin's Lymphoma. It is heart breaking and I don't think anyone who hasn't known anyone to go through something like this, or been through it themselves can really understand. I'll be praying for your husband. I completely understand doing what you can do, just in case.