This is an issue which I believe is relevant to everyone, not just families with special needs kids. Please let me know if you guys have any questions or want me to clarify anything.
As soon as I found out I was pregnant I instantly knew I wanted to save our daughter’s cord blood. Here are the reasons why:
* The possibility of using Belle’s cord blood to help Nathan
* For Belle to have her cord blood available for her in case of future issues
Other countries have made lots of progress in understanding stem cells and in developing therapies for use with stem cells. But the US was very far behind because of Bush’s ban on stem cell research. Since Obama’s election, stem cell research is speeding ahead. Even though right now there aren’t many applications for stem cells, I know it’s just a matter of time until many are developed. What scientists and doctors know about stem cells thus far is just too promising for this treatment modality not to be explored in greater depth.
I believe it’s only a matter of time until stem cell therapy is being actively used in many aspects of healing. For this reason, I thought it was essential to save Belle’s cord blood, as it might benefit both her and Nathan in the future.
Before Belle’s birth I did quite a lot of research and narrowed my choices down to 2: Viacord and Cord Blood Registry. My criteria for choosing these included the number of years in business, the number of successful transplants, whether they’re licensed and/or registered with the FDA, how the cord blood is stored and accessed, whether the cord blood is insured, and a few more factors. I decided to leave price out of it as I figured this wasn’t an area where saving a few bucks would be worth it. Plus they all have payment plans so when it came down to monthly payments the difference wasn’t too great.
I decided to call Duke University as they have the only trial with cord blood for Cerebral Palsy approved in the US thus far to ask about their opinion. I spoke with someone from their staff and they said they can’t give specific recommendations, but in general, either ViaCord or CBR would be fine and they’ve had success with stem cell transplants with cord blood stored at both banks.
Initially I chose CBR for the following reasons:
- They are now saving cord tissue as well as cord blood. The tissue has a higher concentration of mesenchymal stem cells, which are the ones used for regenerative medicine. There is an additional fee to store the cord tissue.
- They recently came up with a new collection kit that saves more stem cells.
- They were chosen to be the only bank to be associated with a new FDA approved stem cell study: http://www.cnsfoundation.org/site/News2?news_iv_ctrl=-1&page=NewsArticle&id=9113&autologin=true
- They have a Parent program where other families get credit if you use their coupon code, plus they offer a nice discount of $250, reducing the total first year cost to $1900.
When I was about to sign the paper work with them, I got in touch with another parent of a child with Cerebral Palsy who told me about LifeBankUSA.
LifeBankUSA is the only cord blood storage facility that has the technology to also store blood from the placenta. I spoke with a couple of their representatives and did extensive research online about the viability and amount of stem cells available in the placenta. What I discovered was that the placenta DOES contain many viable stem cells, and that it contains a greater concentration of CD34+ stem cells, which are the key cells needed for transplants. LifeBankUSA is the only company with the technology to extract and save the cells from the placenta.
There is a greater cost for this service but I figured it would be worth it, as my plan is to hopefully use 1/2 of Belle’s cord blood for Nathan, and save the other 1/2 for her. So the more we can get, the better.
In the end I chose LifeBank for the following reasons:
- Greater concentration of stem cells in the Placenta
- They have been in business for 12 years
- They are owned by a large pharmaceutical corporation which gives them financial backing (which ensures they won’t shut down and thus the cord blood will continue to be well preserved).
- They save the blood in bags, which means I can split the blood to get some for Nathan and save some for Belle (not all facilities store them separately, some store them in a way where if you take it out, you have to take it all out).
- A large number of independent successful transplants
- They spend a lot of money and energy on research. The mom that I talked to has been talking to some of their scientists and I know for a fact they are trying to find ways to use cord blood for siblings.
- They also have a parent referral program, where every friend that you refer that saves their child’s cord blood with LifeBankUSA will give you a free year of storage.
I also really liked the sales rep that I spoke with, and felt that she was the least pushy of all the reps I spoke with from various companies. When I feel that I am part of a sales process it makes me a bit weary, so it was refreshing to speak to a company where the reps aren’t pushy at all.
Our experience with LifeBankUSA was great. They picked up the blood in a timely manner and everything was flawless. Our report stated that we collected 791,000,000 stem cells. As the average cord blood collection contains 725,000,000 cells, we obtained an additional 66,000,000 from the placenta. They also explained that of the 66 million cells, there is a much greater concentration of the CD34+ stem cells in the placenta which is the key stem in a transplant. They are generating a report for me of exactly how many of each cell type we collected, and I will write a post about that when I receive it. They are also doing a study to match Nathan and Belle’s blood to determine their level of compatibility which will give us further information about the viability of a future transplant.
The obvious question is then – how close are we to being able to use sibling cord blood to help children with CP? The unfortunate answer is that we are still a few years ahead. The mom who told me about LifeBank recently attended a stem cell conference and talked with all of the “key” players in the stem cell industry. She spoke with the Dr. from Duke who has been conducting a trial, she spokes with a doctor from Mexico who just finished a stem cell trial, and many other leaders in the industry. All of them mentioned that they are researching and going through the “due process” to be able to use sibling cord blood to help kids with CP, but they don’t have anything ready yet and don’t expect to for a few more years.
Since facilities in other countries already have the technology, I know it’s only a matter of time until these treatments are available in the USA.
I believe stem cells have such great potential for health enhancement. And the wonderful news is that it really IS just a matter of time until they become a standard part of our Western medicine. At the moment the cord blood banks advertise them for issues such as cancer and other related diseases, but what I have learned about stem cells is that they can help in so many ways, at the very least, they can be used for health improvement and regeneration!
Right now, however, the only alternative for kids with CP who didn’t save their cord blood is to go to another country to use cord blood from other sources. There is a facility in Germany that uses the child’s own stem cells extracted from the bone marrow. The only issue is that these are hematopoietic stem cells – stem cells that create blood – so it is still not know whether these blood producing stem cells can help in the creation of neuronal cells. The X-cell center in Germany claims they have a high success rate, however this needs to be verified by a controlled trial here in the USA (currently there is one in Mexico that is in the process of computing their results).
To summarize: If you are considering whether you should bank your child’s cord blood – spend the time doing the research so you can understand what stem cells are and their potential. If you already know you want to save your child’s cord blood and don’t know what bank to use – research ViaCord, Cord Blood Registry, and LifeBankUsa. If you want to save more cells, I’d suggest using LifeBankUSA and saving the blood from the placenta.
For further research and a new post (coming soon): Baby Teeth Banking.