“Incompatible with life”
“Worst type of neural tube defect”
This has been the most horrible, awful week of my life. And I’m not exaggerating, not even a little bit.
Monday, September 12
I received a Facebook message from a high school classmate, someone I see around town occasionally. The Buddy Walk, a fundraising and awareness event for Down syndrome, is coming up soon, and I know she’s heavily involved, so I just assumed she was contacting me about that. I waited until later in the day to read the message. When I finally got around to it, she tells me that her cousin, and my friend, died the night before. Suicide. I was shocked, but not exactly surprised. I knew she struggled with anxiety and depression for quite some time. But I had no idea how bad it was. No one did. I somehow muddled through work, periodically looking at her Facebook page and the final messages she had shared late the night before. If only I had still been awake to see them, I kept thinking. I looked through all the photographs on her page. She was a wonderful photographer. In fact, she photographed my wedding, and took all of my daughter’s professional photos from birth. She never really liked taking pictures of people, but she would make exceptions for friends and family. It was hard to believe she was gone.
Tuesday, September 13
Still in shock and saddened by my friend’s death, I was looking forward to today and my anatomy scan. I wasn’t worried, because I had just heard baby’s heartbeat on my trusty home Doppler that morning. I couldn’t wait to see my baby, and maybe even come home with a nice image of her face.
The ultrasound tech was friendly and upbeat. She pointed out all of baby’s parts and noted how much she was jumping around. At the end, she said baby was lying really low, so she wasn’t able to get a good look at everything, and told me to expect to return in a couple of weeks. She sent me home with a few pictures of baby’s hands and feet.
An hour later, in my OB’s office, I found out the truth about why she didn’t let me see her face. Anencephaly. Incompatible with life. Those were my doctor’s words. Devastated is an understatement. The OB had me call my husband to deliver the bad news to him, too. She told us both that while she wanted us to see a specialist for confirmation (an MFM, or doctor of maternal fetal medicine), she was confident of the diagnosis. The condition is fatal. She will not survive.
We went home in tears, and I spent the rest of the day and night crying and telling my baby that I was sorry, so sorry that my body had failed her. I told her that I loved her with all my heart and soul, and that the universe was a son of a bitch, and that we didn’t deserve this horrible situation. I told her how much she was wanted, about all the things we had planned as a family. I cried until my head pounded, and then I cried even more when I realized that there was no longer a reason for me to avoid taking Advil.
Thursday, September 15
My husband and I left our toddler with my mom at 6:00 am to make the 3 hour drive to the MFM. Before the ultrasound, I found myself hoping, even praying, that my baby wouldn’t have a heartbeat. I already knew the outcome would not be good, that we wouldn’t be bringing this baby home. But as long as she had a heartbeat, the laws in my state would limit our options moving forward. So, I hoped for no heartbeat, something I never dreamed I would ever do.
The doctor confirmed the original diagnosis, adding that it was pretty much the worst type of neural tube defect possible. He said she didn’t have a brain, just a the stem, which was why she still had a heartbeat. Her body was developing normally, but her skull above the chin was missing. No nose, no eyes. No brain. But a perfect little body. And a strong heart. He went on to explain that this was “just a fluke.” My MTHFR mutation did not play a role, he said. I was already taking a high dose of folic acid, which was actually more than he would have recommended for someone like me, who had already had a successful pregnancy and healthy baby. I did everything right. And we still got fucked.
Though we were expecting bad news, I broke down again. It didn’t matter that I barely heard what the doctor said about our options going forward. I already knew. Our options were: 1) Terminate the pregnancy through induction or D&E. 2) Carry on with the pregnancy, and maybe she would pass away at some point before full term, or maybe we would make it to full term, but she wasn’t going to survive longer than a few hours.
Not such great options.
But I knew right away that I simply could not continue with the pregnancy. For some, it’s the right choice to carry to term. But not for me. Not for my family.
We chose termination through D&E, for which we would have to go out of state. A nurse put us in touch with Planned Parenthood, and we made an appointment for next week. It would mean two days and two nights away from home, away from our toddler. But it would also mean closure.
Friday, September 16
Today I’m feeling… Conflicted. I’m at peace with my decision, but I’m still torn between wanting my baby and wanting to no longer be pregnant. When you’re talking about a child who has already been born, you obviously want as much time with them as possible, right? But when you’re pregnant with a baby you know will not survive, it’s difficult to imagine how you can go on with the pregnancy with that knowledge. How do you go on with life? How do you go to work? How do you get up every day, shower, do chores? How do you look at your growing belly and not break down? How do you cope with all the terrible side effects that pregnancy brings, knowing that it’s all for nothing? Not to mention, what do you say to other people about your baby? People assume that a visibly pregnant woman is planning to bring that baby home. Or, at the very least, to expect to give birth to a live baby. They engage her in small talk about due dates and names and daycare options. What does she say to those people? How does she tell them she’s just waiting for her baby to die?
I feel horrible about it, but all I can think about is moving on, packing up my maternity clothes, boxing up the ultrasound images and few things that I purchased for the baby, and unsubscribing from all those pregnancy emails. Is there something wrong with me that I don’t want as much time as possible with her? That I don’t want to feel her moving? I’ve read so many stories about women who chose to carry to term, about how they “had beautiful moments” with their babies before they passed away. And all I can imagine are months of heartache and torture, followed by a painful (and maybe risky) labor and delivery. Only to have to say goodbye anyway.
So, one week from today we will be saying goodbye to our baby girl. I don’t know what happens after that.