Friday, March 12, 2010
I know that one thing I really regret with John was not banking his cord blood. I'm pregnant again and I definitely want to bank the next baby's cord blood. I started looking into it and found out that because John has a metabolic disorder, we qualify for a federal program called the Related Donor Cord Blood Program. This program allows us to collect the cord blood & since I am delivering at Duke, they will store it at their Carolina Cord Blood Bank for free for the rest of our lives as part of the program. I wanted to post this information for anyone else that runs across this site that may have a child with a metabolic disorder and is thinking about having other children. There are other disorders that would also qualify you for this program, but I don't know what they are, so you would need to talk to your hospital/doctors to see if you qualify. You never know what they are going to be able to do with cord blood in the future so it is very important to bank it!!
I've heard from a lot of mothers & fathers that have undiagnosed children with signs similar to John & GAMT. I've only heard back from one mother so far that got an answer for her child. Her daughter has another rare disorder called Phelan-McDermid Syndrom. I wanted to post this information in case there are parents with undiagnosed children that are reading my site because their child is undiagnosed. This is a disorder that can also look similar to GAMT, so it might be something you want to check into. Also, the mother shared with me that before they got the Phelan-McDermid Syndrom, the doctors told her that she had Angelman's Syndrome. However, when the tests showed up that she had Phelan-McDermid Syndrom, they went back and found that human error had occured with the original Angelman's test and she did not have Angelmans. Just want to bring awareness to these two other syndroms in hopes that it helps someone.