PGD WTF?

I haven't written an update for a while. My life right now feels like an out of body experience or a bad horror movie. The last few weeks I couldn't find the energy to write or even the words to type. I still can't. There is just too much to process. Layers upon layers, and they keep piling up. Will our shitty bout of bad luck ever end?  After the news we got yesterday, the CVS results from LB came back, I had to write. We now know the results of what killed my sweet little boy. (For those who haven't read my previous post. Yes I said my little boy, not Amelie. Yes I just had another loss. My hopes and dreams again, shattered. An all too familiar feeling. So unwelcome, so wrong, so should not be happening)

To loose your 19 day old newborn, watch her die bright before your eyes, in your arms is one thing.

Then, to learn the possibility of having a healthy child ever again, (the only thing that gives you hope after a loss) is dramatically reduced due to a stupid genetic disorder (IP) or Incontinentia Pigmenti, that you are the carrier of and which is what killed my daughter.

Also meaning that I am likely to have multiple losses before having a healthy child...OR I could just get 'lucky' and have a healthy child straight away, we just don't know...

To find out.. wait...that there is a way around it. I could do IVF with PGD (Preimlantation Genetic Diagnosis). A painful, uncomfortable, emotionally excruciating process, not to mention expensive (no more savings to buy a house type expensive), which claims to give a 99% chance of a healthy baby. It only guarantees 30% chance of getting pregnant initially with each embryo that is put in, but basically once pregnant you have a pretty good chance. Well as you all know, we chose this option.

We picked a reputable IVF clinic/doctor and selected one of the 'best' (supposedly but now very debatable) labs in the US to do the PGD part. We suffered through it. We did it. They implanted 2 supposedly 'healthy IP free' embryos. I got pregnant.

All looked good with the baby.
We were over the moon.
So happy.
Making plans again, looking forward to the future.
The genetic disorder couldn't be further from my mind.

Then at 13 weeks we learned something was really wrong. The baby was not going to make it and had serious problems. He would suffer. I had to terminate. So traumatized, so sad. Again, my baby was taken from me.

Then yesterday, we found out what it was.

It was IP
FUCKING IP.