Wow, it's been a long time since I've posted anything on here. Anyway, I have a few new things to add here. I still work with AED and while consulting with new donors who are considering to donate with us, many of them have read up on my blog to familiarize themselves with the process. I now get a question from both new and current donors considering if they should donate more about why I stopped donating at 3 cycles. I never really posted my reason because for a while, it was very personal information and I was very sad about it. Actually, the last post I wrote, "what if I fail my screening?" was my response to why I stopped.

I did attempt a 4th donation for a NY couple with a different IVF clinic on Long Island. I traveled there for my screening to repeat testing of infectious diseases and look at my hormone levels and antral follicle count (vaginal ultrasound). There was also one additional genetic test that my previous clinic didn't include with their screening.

Three weeks later, I was shocked to receive a call from my case manager that I tested positive as a carrier of Spinal Muscular Atrophy (SMA). I almost felt they had to be wrong because never has there been any case of this in either side of my family tree. Well, just as my previous post suggests, I came to terms that I can no longer be a donor anymore, and I'm much better learning it this way than the hard way of possibly giving birth to a child who might suffer with this disease. In severe cases of children born with this, they will die before reaching age 2. Most people are confined to living in a wheelchair their whole life.

Having learned this information, I had my case manager from my previous 3 donations send a message on my behalf to those recipients to inform them of the new genetic risk I learned about so they could be informed and test their babies. The good news about being a positive carrier is that my children are not at risk to have this disease unless my partner is also a genetic carrier. If we are both carriers, then the risk is 25% that our child will be born with this. As long as the Intended Fathers weren't carriers themselves, then their children are safe - they just have a 50% chance that they could be carriers as well and if so, their future spouses will need to be genetically tested for this before having their own children.

It was devastating for me to know I can't donate anymore. But at last, that is the reason why I stopped at 3 donations. I was willing to do more. I probably would have done it all 6 times (the maximum allowed in the USA according to guidelines of the American Society for Reproductive Medicine). But, it never takes away the happiness I still feel for helping my first 3 recipients. I will forever be proud of that.