Friday, January 14, 2011

Cord Blood Banking

I need some advice...we are about a month away from delivering our newest baby girl and we have been considering banking her cord blood.  I don't think we would even be considering it if Sweet Pea didn't have Down syndrome.  We've read all too often about how her chances of childhood leukemia and other diseases are significantly higher than those of a typical child.  We have seen too many sweet little girls (it's odd that I can't recall any boys) be diagnosed with that nasty "C" word and require round after round of treatment.  Most have had happy endings, but others are still fighting the battle and we continue to pray for them.  It all creates too many fears to even write about.

I know that some of these fears would exist even if Sweet Pea was typical and had typical chances of having a medical issue, but they are certainly magnified because she isn't typical and her risks aren't typical.  However, the cost of cord blood banking is quite expensive and it seems that the banking companies are succeeding by feeding off of parental fears.  It's like they are saying, "How can you put a price tag on saving your child's life?  Is $2,000 more than your daughter is worth?"

The thoughts going through my brain are these:
  • Am I throwing away $2,000 immediately plus $125 every year after?
  • My daughter is very healthy and why should I think that she will be anything but healthy in the future (and my newest daughter will be too).
  • This one is foolish, but I jinxing her by doing (or not doing) this?
I know that if we don't bank the cord blood and something happens where we could have used it we will certainly be beyond mad at ourselves.  However, the chance of that happening is VERY small, but it is still there.

If I was still working full time and bringing in a decent salary then this really wouldn't be much of an issue.  But that isn't how it is these days.  We are trying to live off of one salary and even that salary has been lowered from what it used to be.  Taking a 60% decrease in income is hard, but it was a choice that we made that we truly believe will be best for both of our girls.  When we made the decision we knew that there would be things that we couldn't afford and we were going to have to make due without them.  But is this one of those things?

What would you do?

I can't leave this posting on such a depressing here are some photos from yesterday.

Sweet Pea doesn't interact with my belly normally so I had to try to capture this moment when it happened.  It's like she was listening to her sister:

 When is she coming out to play?

And finally, just a short video clip of her chatting with me:


  1. I hope some others chime in with their experiences. I'm wondering about this for baby #2, whenever that may be...

  2. Our hematologist/oncologist said based on the current uses he doesn't believe it is that beneficial to save the cord blood, he said you are better off donating it to the general bank. He said a lot of times a better match can be found in the general bank than using one that was saved for that family and he said sometimes they can't use the cord blood because whatever caused the cancer or disease may be in the that family's cord blood. He did set us up with a free service as Emily already does have leukemia so he said in her case since it's free he would save it. He said a lot of these companies play on the natural fear of parents and it may not even be worth the money they are charging. He wishes everyone would just donate to the general bank so that the best match would be available to anyone that needs it. That's merely one Dr's opinion so I wouldn't take it as fact, but I hope it helps you make a decision.

  3. I'm so glad you posted this! You could have taken EVERY word straight from my lips... I agree- I wonder how much of the guilt factor the storage companies are playing, but, ultimately, the idea is intriguing. The one thing I remember reading somewhere (and you can't quote me because, really, what do I know???) is that because our kids have the different chromosomal makeup, it makes bone marrow transplants and the like more dangerous and less likely to happen- and I've always wondered if the cord blood would be in the same bucket. I'm keeping tabs on this, too- curious what everyone thinks. Does your ped have any insights?

  4. Well,I so wish I had the answer for you.Even with my vast and unwanted experience with the "C" word,I am devoid of the right or wrong,in this decision making process.It's extremely personal.I suppose I am a go with your gut kind of gal.It seems to have worked for me thus far so I think,often,it is that first thing that flashed before you when you were entertaining the decision,that you perhaps should do.I do know,that as a parent,during many critical medical making moments with Zoey,I wanted to make a choice that left me with no regrets and once I decided,I had to just go with that and say,what will be,will be.So that is my opinion ... for what it's worth.Which is probably not much.

    One medical thing I did learn,while up on the floor:cord blood,even from a sibling,was that it really isn't the first choice of the oncologists when looking for transplant options.It really depends on the circumstance.Also,the number of kids that head to transplant,with Down syndrome,is far less than typicals.Not because of outcome but mainly because our kids can, and do, do very well with chemo and eliminating the necessity for transplant.Okay enough out of me.

    As for your belly ... darling and sweet pea,well, always darling!

  5. That's a hard one. We didn't bank Ryder's blood, but we didn't know that he would have Down syndrome either. I think had we known, we would have. You can decide at a later date to discard the blood.

  6. We really struggled with this when I was pregnant with Buddy. I wanted to bank his cord blood because we know of Munchkin's increased risk for luekemia based on her Ds. Ultimately, the cost was just not realistic for us. I hate that that was the reason we opted not to do it. I pray daily that I will never live to regret it; and the guilt of having put a price tag on my daughter's health. But truly, it was just impossible for us to finance the harvesting at that time.

  7. I know that has to be a tough decision. I had looked into it a little when pregnant with H and there are programs where you donate the cord blood, and in return if you ever need cord blood for your family, you can receive it from them. It's kind of a happy medium, no additional cost to you for saving it, it can go to someone in need now and on the rare chance you need it for one of your girls in the future they will match you with another donation. Just something to consider. XOXO We love you and Sweet Pea!

  8. Hi Jill - it is a tough decision...I totally know what you are going through. If you do decide to do it, make sure you push them for discounts on the initial fee. I think we only paid $1500. I had a coupon from my doctor but then the I got to chatting with the lady on the phone and she ended up taking $500 off.

  9. We have a son Sam with DS and when I was pregnant with my next son we banked his cord blood in case Sam ever got cancer. Even though he is healthy and it is unlikely it felt like the right thing to do. Plus it could end up helping any of our children. You can ask people to give to this instead of a baby shower or at least ask family. Although it was pricey it gave us peace of mind and may one day help one of our kids. Just my thoughts. Good luck in the decision, sweet pea is beautiful!

  10. Is there a guarantee that you would be able to use the cord blood if Sweet Pea needed it? What I mean is, does it have to match? Can our kids with an extrachromosome benefit from "typical" cord blood? I would also find out how many types of leukemia it can treat. Tough decision, though.

  11. That's a tough decision that I struggled with too. When my son Josh was born, my husband & I thought about it, but with all of the medical expenses we knew that we would incur with his open heart surgery, felt that it was too costly for us at the time. Looking back on it now, I kinda wish that we had just "bitten the bullet" & done it. Right now my son is healthy, just praying that he stays that way.

  12. Since you asked, I would bank the cord blood. I feel that this is one of the things you spend the money on. Miss you guys and I'm sooo excited for #2!!!

  13. I'm glad you posted this...I've often thought about that if there is a "next one..." what to do. We had a somewhat interesting experience with Kaety ... we wanted to donate her cord blood and were not accepted to do this because she has DS. And they advised NOT to bank hers privately because it wouldn't be usable should there be an issue in the future. Had she been typical, the recommendation would have been different, I was told. In any case, I think you have to go with your gut. I think the option to donate to the "pool" and use from the pool should you need it, for me, would be a good option (if I'm ever faced with this decision!), but you have to go with your gut!

    And, oh, that Sweet Pea...LOVE LOVE LOVED the pictures and her chatting with you! :)