Our False PGD Result: The Explaination...

We had a conference call with Dr. Hughes from Genesis Lab, regarding our (doomed) PGD round. It gave me more understanding about what happened and how much harder PGD is for IP as opposed to other disorders. With IP there are part of the gene missing, other disorders there are more or duplicates which are a lot easier to seek out. With the embryo that implanted, there was something called an X-Crossover (a very rare occurrence) where parts of Aaron’s genes crossed over and filled out the faulty ones inherited from me, they made it look like it was normal. That way when they looked at the gene it have the appearance that it was healthy. (Apparently our genetic material is very similar looking which made it harder). There were slightly weaker signals for one side of the sample they assessed (now we know that was my side/the IP side) but that apparently wasn’t enough to indicate anything was wrong. Healthy genes can also look like this. They felt it was safe to put in, that it appeared  as 97-98% healthy. Ugh…we just got unlucky again. It seems we were really the 2-3 %. Hard to believe and comprehend. Why do these things keep happening to us? Why is our case always the most unusual, the most extreme. My daughter died of IP. This has never happened to anyone. Now The PGD to prevent IP failed also. Has this ever happened to anyone with IP before? How does this happen?

Emotionally, understanding provided closure. Made me realize that the technology has its limitations. More so than I thought and was lead to believe. There are so many unknowns and intricacies with something like this. Until we had this conversation, I had been directing my anger at the lab. During the phone call, I was able to voice this, to have my emotional outburst. They listened. I was heard and it made me feel better. I realize they weren’t at fault. That they were working so hard for me. They didn’t want this either, they wanted a healthy baby for me. They worked with me to eliminate the IP. Just, nothing is guaranteed. Could I do this again? I don’t know. What options do I have as a woman with IP? Can I face more losses?

On A Positive Note (not that there is anything positive here). From the IVF cycle, we have a B Grade female embryo left which is now frozen. The lab re-assessed it again. The signals are looking strong on both sides and all looks as it should. They are very confident it is normal. 99%. How can I trust it? What choice do I even have? The lab and doctors are understandably treating us with extra caution. This just cannot happen again. They offered to also do a Genetic Array Test on it to rule out other chromosomal abnormalities. The results will be back in a few days. This little frozen girl, has more of a chance of being IP free, than if I tried to get pregnant naturally. How do I feel about all of this? hopeful. Somehow I have managed to regain a little hope. As without it what do I have left? I cannot give up. What happened made me realize I must have a child, that I am not giving up. I am strong and can do this, in order to have a baby. I just need a break. I need time. I am exhausted and done for a little while.

The Lab as well as the IVF clinic have offered their services for free, if and when I am ready to try again for another round. Although I expect nothing less, I am grateful that they are doing this.

My grief has become so complex. Layers upon layers. I miss my babies, how strange to say this instead of ‘baby’. Again, so close yet so far. I was pregnant just 2 months ago. It is still so fresh in my mind. I miss it so much, the way it feels, the bond, the love, the closeness. Only a woman, only a mother can appreciate this. I would be 20 weeks pregnant exactly today with my LB. My life could be so different. So very different in so many ways.