November 8, 2019
The nice family sitting in the waiting room of the birthing suite where we had our anatomy scan at 22 weeks didn't expect us to emerge from the scan sobbing. We didn't expect it, either. At around 18 weeks, we had a scan to determine the sex of our sweet little baby, and it was discovered that I was carrying a girl, our first. While this news should have put me over the moon after fourteen years raising five boys, for some reason I didn't celebrate as I should have. Even before there was any indication that something could be wrong, I had that feeling. Too good to be true.
After we learned she was a girl, the thing I wanted more than anything were some pictures of her tiny face. I asked the ultrasound tech, an undergraduate neuroscience student at BYU, to try to image her face for us. He struggled to do this, which I thought was odd since he had said that her whole body was facing us. He determined that something must be blocking her face, and he suggested we get a follow-up ultrasound from someone more qualified to do a complete anatomical scan. We set the appointment and a few weeks later we ended up in the birthing suite office, looking for an extension cord to get the ultrasound tech's equipment hooked up to a bigger screen.
As we were looking, the soft music in the office turned to an iconic montage song from the Disney movie, UP, the one that represents Ellie's and Carl's life together. For a brief moment, I remembered the scene of Ellie in the obstetrician's office, grieving because she had received the news that she wouldn't be able to have a child. That's not a good thing to hear before an important ultrasound, I thought.
But there was a sense of irony and humor in my thought because I had convinced myself over the past few weeks that nothing was truly wrong with our baby girl. It was either a mistake, some glitch in the machine, or else something minor, like a sack of fluid we could resolve with some neonatal surgery. Nothing we couldn't handle.
My marriage was strong. My family was strong. Our faith was strong. I had a sense that we could handle anything as a team. While my husband and I were out of the room, looking for an extension cord, the ultrasound tech found another monitor to use with his equipment and invited us back in to begin. I hopped up on one of the uncomfortable beds they use for these types of exams, on a strip of paper meant to keep the place sanitary, and exposed my belly for the gel-covered ultrasound probe. After a few moments of getting oriented to what he was seeing, the ultrasound tech asked us what we had seen at the last ultrasound. I explained that there had been some concern about some obstacle to seeing her face, and we just wanted to get that checked out.
Our tech investigated the area of the skull and the face, and after what seemed like a lot of patient waiting on our part, he explained that the reason the other ultrasound tech had trouble seeing the face wasn't because it was covered up. It was because large parts of her skull were missing. "Some sort of anencephaly" he said, though I wasn't entirely sure what he meant at that point. As our guide explained what he meant, words like "not conducive to life outside the womb" and "stillborn" came into the conversation. My husband asked to be excused to leave the room, and I sat on the bed, wondering what to think about all of this.
I needed more information, so I asked questions. I'm really good at that. I asked about possible care options and cases where babies had pulled through. Our tech didn't like to sugarcoat things, and told us that we could probably still have a birth plan much like we'd had before: a home birth with our midwife. There would be one crucial difference: the lack of an expectation that the baby would survive. A planned funerary service rather than a planned newborn phase. I didn't cry, not until I asked him to explain to me where her face was and he showed me what looked like a vacant bubble of fluid with just a few visible patches of tissue. "I think these might be nostrils," he said.
On the drive to pick our kids up from their grandparents', I said to my husband, "If she has lungs, and she has nostrils, maybe she should be able to breathe, right?" But neither of us knew. We had been prepared for something to be wrong with our little girl, but "not conducive to life" was not anywhere on our radar. It came out of left field. At no point had this possibility been entertained by either of us. A funeral instead of a birth? How do you wrap your mind around that?
How do you wrap your heart around it?
We knew it would take time to let this soak in. When we arrived at my husband's parents' house, he quietly told them the prognosis, and we planned to tell our kids when we got home, where they could feel comfortable and safe despite the scary news. We picked up ice cream and a family movie, and sat the kids down in the living room to give them the news. We explained that Abigail would always be their little sister, but that she would be watching over us from heaven, and we would have her with us forever. We also informed them of Abigail's deformity, that her skull and face were not completely developed. Our ten-year-old said that he didn't care what Abigail's face looked like, he would love her anyway. He's been rereading R.J. Palaccio's book WONDER this past month, one of his favorites. The little ones didn't seem to understand at all, and were eager to watch the movie. Our oldest (12) has been the most perceptive and quiet. I generally believe that openly talking about things keeps them from becoming a source of undue pain or shame. I don't want any of my kids to feel ashamed of Abigail. She is beautiful, our first daughter, our miracle. We will all love her no matter what she looks like or how long she is physically with us.
I didn't want to tell my side of the family. I didn't want to tell anybody, as I was still processing it myself and didn't want to deal with other people's reactions. But I especially didn't want to tell my younger sister who is due in January, two months before we expect our sweet bundle of joy. To tell a woman such devastating news while she is pregnant seemed like a terrible thing to do.
So instead, the first people we told outside of Bill's parents and the kids were the Smiths. It was Bill's idea because the Smiths had their own story and their own baby angel. He thought they might give us some perspective, or some comfort, or maybe just telling someone who had been through it would be relieving. I'm really glad we went. Not only did we get a free farm kitten out of the visit, who would become our "therapy cat," Sunny, but the discussion we had with the Smiths soothed my heart and took away the aloneness I had been feeling in this. Because the Smiths share our faith, we were able to have deep conversations with them about our baby and their baby, and there was so much comfort in understanding that our daughter would not be gone, even though she may not live for very long.
The next few days were LOOOOONG. Grieving had given me a semi-permanent headache. On Sunday, we decided to video call my parents and share the news with them. Still wanting to keep it from troubling my pregnant sister, and wanting to tell her in person when the time came, we asked them not to share it with anyone else. My mother had been crocheting a baby blanket for our girl, which I knew. I told her we still wanted it, of course. She showed me the bonnet she had made to match the blanket, and I said that it was perfect because I had seen other babies with anencephaly wearing bonnets like that. She said she would be honored if her granddaughter would be buried in it, and Bill said we would look for a burial gown that matched.
It was Sunday night that I found anencephaly.info and began to read birth stories of other babies with anencephaly. I was surprised at how many of them were born alive, despite the awful statistic I had read that 75% of these babies are stillborn. It gave me hope that maybe our baby might be born alive, regardless of what the ultrasound tech had said.
But when it was dark in my bedroom and sleep evaded me, I remembered the image of the empty face and wondered how I could even hope that a baby with so many challenges could possibly survive. It seemed impossible.
So many things seemed impossible.
How could she be kicking and doing flips in my womb if she were so close to death? Her body seemed in all other ways utterly perfect, even down to her little toes. How could I reconcile the haunting image on the ultrasound with the fact that my baby was ALIVE and kicking? How could I plan a burial service when she was obviously still here and fighting for life?
On Monday, I went back to school. I dreaded telling my neurobiology professor the most because of something she had said during an early lesson on the history of neuroscience. We had been discussing Descartes' views of the brain/spirit duality, and she mentioned that all of us in the class probably had some vestiges of Cartesian views on duality. How much of the personality of a person, their memories and consciousness and emotions, was purely physical and how much could be attributed to a separate spirit? She had made the statement that she didn't personally think there needed to be a separation at all, that the brain accounted for all the activity usually attributed to the spirit, including a person's memories. I was afraid she would be cold and clinical, possibly believing that my baby wasn't really a person at all if she lacked the higher brain function associated with memory-collection and storage.
But people surprise you. She wasn't cold at all. And her sympathetic embrace brought my tears out in the open. She said that my baby could hear and experience and feel us, that her spiritual senses were perfect and she could hear our voices and sense our love as we talked to her. I'll be forever grateful to her for treating my baby as a person and seeing that there are things beyond our reductive senses that are just as real.
When I told my chemistry professor, it was less personal. It's a larger class, and we don't have much of a one-on-one relationship. I informed him of our diagnosis and he let me know that there was some flexibility in the schedule if I needed any due dates changed, in light of our news. I thanked him, and that was it.
There are still steps to be taken, so many steps. There are things to be considered and things to be decided, and things to be prepared, not only for the possibility that she will be born sleeping, but also for the possibility that she will be born kicking. In the first few days since learning of Abigail's genetic defect in her development, our emotions had been all over the place. At this point, an uneasy grief settled in, and I began to wonder if I would ever be happy again.
