Saturday, August 16, 2014

Cord Blood and Tissue Banking - Why is it so difficult to understand?

As we are ticking down to the last 3 months, my husband and I have decided that we are going to bank our last child's cord blood and tissue. With our first daughter, we thought about it and was in a bit of denial and lack of understanding. When we had a scare with our daughter, I told myself that I would have paid anything to even have a backup plan. So, although I have a huge guilt now that I didn't do it for my first daughter, I won't make the same mistake again.

Now, after reading all the brochures and talking to my OB about it, I still extremely confused about all the different banks and what makes them different. I've read other blogger's blogs and have done some research down to reading FDA reports. However, I'm getting extremely confused with all the scientific terms and wish there was some description about it.

Here is the thing why its so important to understand the difference between these banks.
1. They are NOT all the same. They have different collection methods and processing methods. This results in different collections and what is important to you make not be what will be available to you later if you were to ever need it.
2. There are different price points and these banks try to entice you with a better price. But when you are spending thousands, do you really care about $100 to $200 difference versus the quality of the collection.
3. The locked in storage price is different among them and when they will change the locked in price. So, it is important for you to have some kind of long term plan on how long you plan on storing it. Sometimes, the volume collected is only good for up to a 10 yr old, so why pay for more storage after that. Or, a lot of the available future treatments will have been recognized in your child prior to reaching adulthood, so do you need to pay for more than say 18 years? Or, are you banking on future scientific research and planning on paying for the storage for as long as you can.

My biggest concern of all the 3 I've listed above is #1. I have #2 answered for myself. I'm not going to let their price point cloud my judgement because its minor in the long run. And #3, I think I have time to decide that as we go as long as I know the companies policies and contract ahead of time.

But, I cannot find answers to #1. What are the pros and cons of each bank's collection/transport method and their processing method? If I collect more volume of blood cells, am I getting more of what I need or will it be diluted with the other cells along with it? Also, based on their collection methods, when its time for engraftment, what will the quality be like and the success rate? What is the success rate at 10 yrs and 20 yrs? With so many new collection methods, do we even have data to will go that far?

So, I will be contacting the local reps of 2 of the banks as I have already eliminated it down to 2. Lets see if they get back to me and what information I will get. Hopefully I will get this info in time before this little girl arrives!

2 comments:

  1. Congrats on Baby # 2! Woohoo!

    We did Cord blood and tissue with our # 2. I too had a hard time finding info on cord blood and tissue as well. My parents really insisted that we do it though. We ended up going with CBR because it was the most well known company that does it. I think the reason that you can't find the answer to #1 is that this is still pretty new stuff and not enough research or data points have been collected to know all the pros and cons.

    CBR ended up having problems with collecting the tissue sample. I was kind of annoyed. After they collected the tissue and the cord blood sample, they notified me that everything was collected properly. A couple days later they called to tell me that their cup manufacturer had a defect and that they tested the cord blood and it was fine, but when they tested the tissue they found traces of bacteria in it. They don't know if the cord tissue can still be used or not. At this point they are going to keep the tissue for me but refund me all fees associated with it. Still annoying because it's not like I can collect the tissue again unless I choose to have a third child and at this point I don't think that's going to happen.

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    1. That is absolutely horrible! At some point, its not about the money but that you had only 1 chance to get it done right. I did some research on CBR and it was one of the oldest banks out there. What info I collected was that CBR used a rather dated method of collection and transportation. My OB suggested ViaCord and StemCyte due to their transport method and collection kit. There is lots of info online from the FDA reports about processing but I really just don't know how to translate the scientific meanings behind them. Wish I was a bio major! But, then I read that CryoCell has a new method that there is little info on. I hope that the tissue they are banking for you will still be good. Tissue has so much future potential! You can always go for #3!!!!

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