I was reading through a pamphlet on newborn screening the other day and came across a page describing cord blood banking. As I read the page, I started to wonder about cord blood banking for an infant with Down syndrome. My first thoughts were that it was a no brainer - of course you would do it. Infants with Down syndrome have a small but increased risk to develop leukemia, and leukemia which can be treated with stem cells obtained from cord blood, right? Apparently, it is not this simple!
As I thought a this situation a little more, I began to have questions. There are two options for cord blood banking in the United States currently - public cord blood banking and private cord blood banking. Dr. Vincent Iannelli has a great article covering the current status of cord blood banking in the U.S. Since private banking is so expensive, I decided to contact Cryobanks International (the national public cord blood banking facility) to see what their policy was on collecting cord blood from infants with Down syndrome. To my surprise, they said they would not accept a sample from an infant with Down syndrome! Unfortunately, the person that I was talking to was unsure of the science behind their policy so I am going to have to call back for more clarification.
Before I talked to the private cord blood banking facilities, I decided that I needed to focus my question a little bit. Instead of asking whether they would bank the cord blood from an infant with Down syndrome, I decided that the more important question that I needed answered was if any infant with Down syndrome had ever been treated with their own cord blood? While I am sure that the for-profit centers would bank an infant with Down syndrome's cord blood for a price, it really is more important to know if the cord blood is usable. I have posed this question to two of the main for-profit cord blood registries and I am waiting for their answers. As soon as I hear anything, I will update this blog!
Did you look into donating or banking your infant with Down syndrome's cord blood? What were you told?