I am almost hyperventilating. My chest hurts and I can't stop crying. I think it is about time to go home.
Damn google anyway!
My last SHARE meeting I met another mother that lost her son at 18 weeks for unknown reasons. She has a history of HELLP and preterm labor and was diagnosed with MTHFR. She is getting her two children tested for spinal chord defects because one has a dimple and the other was born with a hairy lower back. We got to talking and we have a lot in common. My daughter also had the hairy back. We knew that was a very good indicator of spinal chord defects but she developed normally so we never thought about doing an MRI.
However, Aiden had SEVERE neural tube defects. He also had a chromosomal problem, but no one knows if the two were related. It's possible one was exacerbated by the other. Now it is very likely that I have some type of resistance to folic acid so the nurse at SHARE recommended that I get my daughter tested (an MRI to check her spinal chord) and get myself tested for MTHFR. MTHFR is a mutation that causes low levels of folic acid in tissues, which can cause the neural tube defects in fetuses, and high levels of homocysteine, which can cause clotting in the placenta and fetal death.
The low folic acid is an easy fix and I am already doing it. High levels of folic acid prior and during preganancy prevent the neural tube defects. However, if I also have the high homocysteine (I may not, neither placenta had clots) then things get way more complicated and higher risk. That treatment involves blood thinners throughout pregnancy and pretty high risk.
I made an appointment with the high risk specialist I like to get all this checked out. If it is going to be a super high risk pregnancy with all kinds of meds and monitoring, then adoption is looking more likely.
Here is where the soul crushing guilt comes back: All of Aiden's problems could have been from a mutation I have. I saw a few papers that attribute chromosomal problems like down syndrome with MTHFR. Oh my god - what if I did cause this???
I knew Kira was likely to have had a very mild defect. I can't remember if I was taking my prenatals consistently with Aiden, I don't think I was. What if this was my fault? I thought I had convinced myself there was nothing I could have done, what if I was wrong?
The good news is that this can be treated, the bad news is that this can be treated. I could have saved him. I could have made him okay and I didn't know.
There aren't enough curse words for this.