Monday, November 28, 2011

Soundoff: Cord Blood Debate

I spent my morning at the OB's office for gestational diabetes screening and the hemoglobin check. Passed with flying colors and only gained 1 pound in the last month. I don't suppose that makes up for the 20 I gained in the first 20 weeks, right? We talked about my crazy-lady tendencies and how we ended up at the L&D ward yesterday. And then she left us with something to think about: cord blood. My OB highly encouraged banking our cord blood for this baby. She went on to talk about the technology and stem cell research and cerebral palsy and how amazing things are being done to save lives and improve the quality of life with this stuff.

And of course she's probably getting a kickback from CBR, as it's the only company I had memorized myself from the mass amounts of marketing they do. If you've been pregnant in the U.S., chances are you've held their pamphlet in your hand at least once. Or a bag they print to hold your pregnancy magazines and swag from your OB's office. You know the little girl staring down at her belly button on the white and purple brochure. I am not endorsing them. As a matter of fact, we almost certainly will not use them ever because there are other, cheaper companies that are also accredited and reputable. Just mentioning them because they attack you with their brochures.

Now, I know that other than the possible kickback my OB might get from endorsing them, she also is looking out for our well-being and the well-being of this new baby. She is endorsing anything under the sun that might give us a fighting chance if we do end up a very small statistic again. But also, she likely feels an obligation to endorse something that could mean we don't lose another baby. She feels as though her success as an OB with our case of loss and hopefully life again is contingent on her giving us all the options and encouraging we do everything in our willpower (and pocketbook) to see that things pan out differently. She also wants the success of a healthy baby and wants to ensure that happens because she is a good person.

While pregnant with Andrew, we were bombarded by the blood banking companies and their mass amounts of paraphernalia. It turns out that no matter what, banking cord blood was out of the question-- obviously. But if we had a normal birth with a live baby as the outcome? We would've probably declined the opportunity. Why? Because it's so stinking rare to be in that tiny, itty-bitty percent of people who actually need the cord blood ever. This technology is relatively new anyway and as I've written before, we are were the minimalists. Who needs a video baby monitor, let alone to bank cord blood for something so statistically rare anyway?

Yeah, well now we're the statistic. We weren't convinced in all our research that cord blood was the way to go anyway-- as you can read all over the web and in print that cord blood may not even help your child even if they were in need of it. That certain races don't benefit as frequently as others in the use of their cord blood. That it will likely be a huge waste of money. 

And here we are now. We have lost our firstborn and his entire life. While it had nothing to do with our decision against cord blood before (like I said, didn't matter anyway), it sure did place us in a minority. A tiny statistic that doesn't happen to over 99% of people. But it happened to us. So this whole cord blood talk has found new meaning to us. I'll tell you now that we are almost certain to go for it this go-around. We wouldn't want that (still) slim chance of cord blood being helpful to inhibit this child from having a full life that continues on way past we are in our graves. We don't want the prospect of $3,000 (give or take) to be the reason our child cannot have critical stem cell research if needed. I guess that opens up our political views on that subject a bit. Try convincing a couple who lost a child not to believe in stem cell research. I scoff.

I've been reading a blog over the years of a woman whose son has cerebral palsy. He had a stroke at birth-- but his family saved the cord blood. They're thankful they did, because stem cell research may be the key that helps their child speak more clearly and live a more "normal" life. 

Advantages that I can see:
- potential life-saving possibilities
- potential sibling support
- stem cell research leading to better quality of life and/or saving life

Disadvantage:
- cost (upfront and annual)

When you've lost it all, you hardly want to let something so trivial as a few thousand dollars prevent you from having the best care and chance to survive for future babies. I'm not sure we'd be able to forgive ourselves if this baby was born and needed the blood at some point and we didn't based on cost. Plus, who needs new furniture anyway? Someday we're all going to die and leave it all behind. Perhaps though... it could mean our children will live a little longer or enjoy life more fully.

So here's where I open this to you... if you're not comfortable sounding off by name, please do so anonymously. We'd love to hear your opinion on the matter. Did you bank cord blood? This question is open to all and not just baby loss parents. Would you bank it again? Any stories to tell or companies you've researched or recommend? Do you still disagree completely with the process and want to sound off on that? This might also help fellow pregnant mothers/fathers who are interested or considering the same thing.

14 comments:

LauraJane said... [Reply to comment]

I know I mentioned this earlier, but I'll do it here again.

We banked Jack's cord blood. We reasoned that if we could afford it, we'd do it. And we can, so we did. It's not cheap, and I kind of find it irritating it's unattainable for some people who might benefit from it, too.

Anyway, we did it before, we'll do it again. I remember my OBGYN telling me the stem cells can help regenerate/grow organs/tissue and additionally it's supposed to be helpful for diabetes and MS and even for spinal cord injuries and whatnot. Ultimately, stem cells don't cure brain damage, though to be honest, we definitely did ask (because what more is there to lose?), but I figure every chance I can give this baby to outlive me, the better.

Good luck in your decision making!

tushkan122 said... [Reply to comment]

One more disadvantage to banking cord blood (other than the cost) is that the companies who do it have not been able to fully perfect the way the cord blood is stored, and a lot of it goes bad, as a result. I got this information from our Ped who we consulted on this issue when I was pregnant (in the US). I do not by any means disagree with cord blood banking, just wanted to throw in one more argument to consider...

SG said... [Reply to comment]

We are debating the same. Since we were in the unlucky tiny minority once, we'll probably bite the bullet and pay for cord blood banking this time...

arr said... [Reply to comment]

We signed up with ViaCord for our daughter, but unfortunately there was not enough cord blood to bank, so we were unable to do it. We would absolutely do it with future children.

KrystalK said... [Reply to comment]

My personal outlook on the subject is this....I believe in letting the cord pulsate long enough for the blood in it to get to the baby, if possible (no complications) The baby needs all the blood in the cord. I see the argument at hand that "what if they need it later" Maybe taking the blood from the cord and putting it in a bag will raise their chances of needing it later? I really dont know honestly. But what if? My daughter died immediatly after her cord was cut. it was an emergency situation though. I have the "what if's" what if they let it pulsate while they worked on her, that was what kept her alive? i doubt it was possible but i do think of that often. My main point is that the child needs that blood, that is what it is there for. I have read a bunch of articles on-line that suggest that it is best to not clamp the cord until it has stopped pulsating. The idea is that the pulsating cord is filled with oxygen-rich blood that is intended to go back into the baby's body immediately after birth to help increase their blood volume, antibodies, iron and oxygen levels (which also help inflate the lungs) There are a lot of other ideas and facts on this subject as well i feel would be worth looking into before making a decision to bank the blood in the cord that could be banked in your babies body instead. I would not at this point but my mind may also be changed if we get the chance to have another child. I know fear could sway my ideas, as it has shown to already in other areas of my life. I also dont feel we have the funds to do such and right now feel very strongly about waiting to cut the cord, especially after my last pregnancy. Best of luck in your research, decision and with your new little bundle of love and joy. blessings.

Kristin said... [Reply to comment]

I probably won't be doing it, because of the cost really. Being out of work right now, it's not even a mater of do I want to pay it, we just cannot afford it. If I had a lot more money, I'd probably do it, but to be honest it's not something I'm too concerned about (if it was, I would find a way to get the money!). Best of luck making a decision! XP\O

Tiffany said... [Reply to comment]

We had long conversations about this before I had Max. After having worked as a pediatric oncology nurse, I saw firsthand how many families can be blindsided with a catastrophic diagnosis (little did I know we would be that family x2 a few years later...). I talked to our oncologists about the issue even. They said with a family history of certain illnesses they would bank it- or if they learned there was a problem before the baby was born. But if not, they probably wouldn't- especially if money was tight. We made the decision not to bank the kids cord blood- however I believe that it is invaluable in what it can or can potentially do... For that reason we tried to donate the kids blood. Unfortunately when you are just donating it, as opposed to paying to bank it, there are pretty strict rules regarding the timing of when the carrier will come to get it... With Max, it was too late to even collect it. With Ellie, our dr. collected it, but a glitch with the carrier meant it went to waste! I was sooo mad!
With these two- I don't think we will bank it... We could swing the cost of one- but not two... That being said, if I thought it was something that would give me peace of mind- I would do it. But I think that the chances of my child needing it, it actually working out to where it could actually be given, etc. is slim. Of course, God forbid something happen to one of them where they would actually need it, I would never forgive myself...
I think it's one of those decisions you have to make as a parent that you will always wonder about... I think just listen to your heart... I am of course, more wanting to bank it this time around because of what's happened to us in the last year. I keep telling myself to take my crippling fear of losing another a child out of the situation- yeah right! The geneticist we met with before we did IVF again said with our family history- what happened to Ellie and Max's autism- there is no reason to believe it was any reason but bad luck... I keep telling myself that lightning doesn't strike three or four times- and that the chances of us needing our almost nothing... I'm not quite convinced yet...
Sorry for my ramblings- I'm very torn on the subject myself!

Caroline said... [Reply to comment]

Very good post. We had planned to with Cale, but didn't for obvious reasons. But we did bank Finn's. Same reasons LJ stated. Yes, there needs to be more research, but there is research now that shows that in SOME cases it can help. And the way I see it, the more research they do, the more reasons they are going to find it to be helpful. I hope I never need to use it, but if I do, maybe it'll be ten years from now when we know how effective it is for all these other things. If I end up in a situation where cord blood COULD help - I'd be kicking myself if I didn't have it to at least try.

We did go with CBR but that was because it was a recommendation of my doctor (who banked through them for her children) and because they offered a good military discount (so maybe ray could get that for being a vet?) Also, they grandfathered us in to the 2010 rates since we had planned to bank with Cale. So I was happy with their customer service (food for thought). Also, they store their blood in Tucson, AZ (my hometown BTW) as it's generally free of natural disasters - good thinking for a facility with such important contents.

I want to say it cost us about $1700 upfront (again, we had a military discount) and then it's only $125 annually after that. We figured we can afford it, it's worth it for the peace of mind. Many families won't need it - but for those who do, it's liquid gold.

As for the collection - it was really easy. We didn't hurry and cut Finley's cord any sooner than we would had we not banked the blood. His delivery was normal and beautiful and afterward my doctor stored the cord blood (and had plenty to store - more than what they needed as they call to confirm receipt and tell you how much they got). The carier came to our room within a couple hours of delivery - it was a really easy, really reassuring transaction.

We figure that we may not do this with future kids as cord blood has been proven to benefit siblings. But we may - who knows. We'll cross that bridge if we are lucky enough to have more kids (if we are brave enough!) If we didn't bank, we would have donated, although as someone mentioned earlier that unfortunately is harder to do - you have to have a baby at a convenient hour for pick up of the blood (which if you are induced is usually easier to predict).

So. . . novel complete, hope this helps - please let me know if you have any more questions about it!

LookItsJessica said... [Reply to comment]

I can say we most likely would have banked Liam's blood if he had made it to term. We were much more financially stable before we had to use my crappy insurance with that hospital stay. This time around, we would love to bank it but probably wont due to finances. No political or moral qualms about it though, I'm pro stem-cell research.

Sorry if this is a double post, I think I tried to submit this comment a few hours ago and it didn't show up for me.

Jenni said... [Reply to comment]

I have never commented, as I am not a baby loss mom, but I enjoy reading your blog and don't tend to comment on any of the blogs I read unless I feel I have knowledge or experience that could help. We have 2 kids (ages 2 and 4) and did not bank their cord blood, but did have a lengthy debate about it. I have a biology degree so I am well educated in the benefits and limitations of cord blood. In cases like the one you referenced, where an accident or incident occurs and causes a problem (cerebral palsy) then cord blood definitely has the potential to create a better outcome. In cases of genetic illnesses, often using the child's own stem cells are not an option for treatment because the disease can return because the same DNA is in the stem cells. I too am a statistic as I was diagnosed with a neuroblastoma (a "common" childhood cancer) shortly after I was born. Although most likely not a genetic cancer, in some rare cases it is, and I was concerned about my children potentially having it. After consulting with an oncologist, I learned that cord blood would most likely not help in that situation due to the genetics so we opted not to bank the cord blood. That said, often cord blood from a healthy sibling is used for an ill sibling and since the healthy sibling does not have the genetic disease, it can help the ill one. Both of my kids are now old enough that if they happened to be a match for one another and we encountered an illness that needed a stem cell transplant then each could be a living donor for the other.
I think it is a definitely a personal decision!

Anonymous said... [Reply to comment]

Hi B,
Yes, this indeed a very personal decision for you. I think if it is tugging at your heart stings even a little bit, you should do it. Talk it over with E until both of you come to a decision that you are comfortable with. I can see you are struggling, and what you are going through must be very, very difficult. It is easy for me to say, but I think once you pray about it, make a decision, I think you will have peace in your heart.
I hope this helps.
WYR
PS-This is totally off topic, but I think you need to be aware of this. People enjoy reading your blog for its honesty and heartfelt emotions. What is difficult to read is how negative you are about some places ie, your Quad Cities visit. Maybe you could leave out that you never need to go back to a certain place again. I thought when you trashed New Orleans, you maybe understood that that is home for some people. Honestly, it's harsh and it's just coming across as unfair. If you don't have something positive or constructive to say, maybe you should leave it off the blog.
Just sayin'.......

B. Wilson said... [Reply to comment]

@Anonymous

Gotta be honest, I have no idea how I was being rude about the Quad Cities. Whatever, I don't have to defend myself on that. We ENJOYED our time. And New Orleans is a GREAT place that I enjoy visiting. But the smell of vomit and copious opportunities to purchase sex leads me to believe it's pretty full of debauchery. Even locals will tell you that. It doesn't mean there isn't beauty and wonderful people living amongst it all.

If my blog is so popular for honesty and heartfelt emotions, then I'd appreciate being allowed to share as I choose no matter if it's offensive or not to some. If you aren't a fan, please stop reading.

Tiffany said... [Reply to comment]

Wow at anonymous' comment. Totally unnecessary and uncalled for. I don't understand complimenting a person for being honest and then telling them to stop being honest in their personal space. But I digress...

We considered banking Julius' but ended up not for many of the reasons you posted. And again for many of the reasons you posted, I think we will this time around. We also are the minority/statistic and if there is something that could potentially help our children we will do it as long as we are financially able to.

Courtney said... [Reply to comment]

Hi there,

I just came across a discount on cord blood banking on Zulily.com (need to be a "member" but it's free and instant sign up). I have no idea what companies you're looking at, but this one is FamilyCord and it's half price for blood processing and first year of storage. Thought I'd pass it on!

http://www.zulily.com/p/familycord-120511-9158-876816.html?pos=94