Guilt and Knowledge

My first ultrasound was done at six-weeks gestation. My first photos of my twins, and the day my pregnancy was confirmed. I remember being so relieved, so happy. I left the exam room and stopped at the doctor's office door, where I jumped up and down and showed him my new photos of my new babies. He smiled and let me hug him before casually handing me a bottle of folic acid, telling me to take one with my prenatal vitamins.

I didn't do it.

Looking at the photos after Ella's diagnosis, I was certain they'd known. Maybe they didn't tell me because it was too early. Maybe they'd wanted to give me a few weeks of happiness between seven years of infertility and a lifetime of grief.

In my head, I know that at six weeks the window for her neural tube to close had passed. In my heart, I've never forgiven myself.

I'd been transferred from the fertility center to my regular ob/gyn by the time of my next ultrasound and Ella's diagnosis five weeks later.

I didn't search the internet. For months, I didn't google anencephaly. I needed them to look me in the eye and tell me what they knew. I needed to not get lost alone in a sea of information. I needed facts from people who knew they were talking to me about my precious baby. For days, I only knew a handful of them, and I clung to them, repeating them to myself over and over. I knew that if she survived birth, she wouldn't live for more than a few hours. I knew that her chances of surviving birth were greater with a c-section, I knew that there was a chance that Lennox's life would become endangered and I'd need to be prepared to face terrible decisions if it did, and I knew one more fact that nobody would say: that there was a possibility this was my fault.

I needed all of the possibilities to be on the table in order to process any of it. Nothing could be left off, especially if it was just to spare me from guilt. I needed someone, any one of these doctors, to acknowledge that I could have done something to cause this. I could have been the reason my baby girl was going to die. Even if I wasn't, it needed to be ruled out for valid reasons beyond just attempts to pacify me. I needed facts to ground me while my world spun out around me.

Eventually I had a doctor who listened. While he would never concede that I could be responsible for my daughter's fate, he did recognize my desperation to understand, and he spent time talking with me about it from both medical and religious perspectives.

I've carried this with me for nine years. The possibility. The unknown. The guilt.

Recently I learned through genetic testing that I have two MTHFR gene mutations, and under Disease Associations, the words "Isolated Anencephaly" paralyzed me.

It seems like I should feel better... or worse. It's been a few weeks and there have been days it's hard to get out of bed as I re-live every conversation and sit with this new tangible information that I keep poking and turning over in my hands, shaking, trying to force it to explain to me why my daughter is gone. It isn't bringing me peace like I would've thought. It seems to be telling me that it is my fault. And that it isn't. I'll fold this up and tuck it away among all the things that make me who I am. And like everything else, I'll take it out when I need to, run my fingers over it, become familiar with it. The guilt remains, and I'll carry that along with the grief, the pain, the love, the happiness, the miracles, and the memories.

The unknown, however, is smaller now. I have more information to ground me and balance me as I move forward every day in this world that still spins out around me, and for that, I'm very grateful.

October is pregnancy and infant loss awareness month, and "I have loved the stars too fondly to be fearful of the night."