In October 2011, I was a 36-year-old, Texas resident, and mother of two. I was a minivan driving, stay-at-home mom with three college degrees. My husband, a military officer, was deployed to Iraq for the prior 12 months. We had considered adding one more child to our family and were thrilled to find out that I conceived within two weeks of my husband returning from Iraq. This was our “homecoming baby,” the beginning of our “happily ever after.” I followed all of the rules… I had been taking prenatal vitamins for five years prior to becoming pregnant without a break. I exercised, ate well, and even refused to color my hair for fear of any adverse effects on the baby. I even remember researching online the amount of lobster that it was safe for me to eat before an anniversary dinner.
As we cleared the 12 week scan without any issues, we excitedly shared our news with family and friends. We thought we were in the clear. I had not had any complications in my prior pregnancies and did not have any reason to suspect that I would have any complications in this one.
At my 16 week OB appointment, I expected to be given the AFP test, a simple blood test that measures the risk of the fetus having a neural tube defect. The test is said to catch 75% of neural tube defects. Unfortunately, my appointment was at 4:00 PM, the doctor was running late, and the lab closed at 5:00 PM. My doctor felt there was little need to worry and recommended we wait until the next appointment, at roughly 20 weeks, to perform the test. I would have my “big” ultrasound prior to my OB appointment, and the OB even suggested that if the ultrasound technician could take clear pictures of the baby’s spine, we could skip the AFP test all together. In the end, it did not matter, as my baby’s defects were in the 25% that are not caught by the test.
My appointment was set for 20 weeks, 3 days at 3:30 PM. Like most naïve pregnant women, all I was focused on was finding out the gender of my baby. The day prior to the ultrasound, my best friend took pictures of my older son holding paper arrows towards my baby bump with “boy” or “girl” on them. The plan was to share these on Facebook once I had the news.
Already having two boys, I was hoping to finally have a baby girl, so when the technician told me that it was a third boy, I felt tears spring to my eyes. I will forever feel guilty about this feeling. The ultrasound was over quickly. The technician was silent during the exam and only gave me two pictures of my baby. I noticed that the little numbers in the corner of the screen appeared to be indicating that my baby’s head was only measuring 17 weeks, which surprised me because my other two babies always measured ahead. Prior to the ultrasound, I drank a high sugar, glucose drink as part of my gestational diabetes screening. I remember thinking that it was odd that the baby was not moving around at all since I had just consumed so much sugar. As we left the ultrasound, I told my husband that I thought the technician was “terrible.” I started crying a bit about having a third boy and my husband said to me “Why are you upset? You got what you wanted. A healthy baby.” I agreed with him and uploaded the “boy” picture to Facebook to share the news as we walked to my OB appointment.
When my OB came in the room, I asked him if the measurements looked okay and he said yes. He asked what I was having and I told him another boy. We discussed circumcision. As we talked, he opened my chart and told me “Well, there was one thing that the technician was concerned about.” I immediately burst into tears. He excused himself to go call the technician for more information. When he returned, he assured me that he thought what was seen would be at the “far end of normal” but said that I needed to see a Maternal Fetal Medicine specialist (MFM) as soon as possible. He told me she noticed some abnormalities in the brain. His office staff worked to get my insurance referral approved immediately, but were unable to because of the late time. My appointment was made for 9:30 the next morning.
That evening, my husband and I took our children to Chuck E. Cheese as we had already promised them. We picked up pizza and headed home. I spent the entire evening researching what I had been told (rounded brain stem, misshapen cerebellum) and crying.
I did not put make up on prior to my appointment with the maternal fetal medicine specialist because I knew, in my heart, that the news would not be good. The technician spent a long time giving me a “level two” ultrasound, a more detailed picture of my baby. She was silent like the last technician. When the specialist came in, he continued the scan. I heard him say “There it is.” I will never forget the next words. “Your baby has a defect in the spinal column. Spina bifida. Severe.” I again burst into tears. Although I already knew what spina bifida was, my husband did not, so I asked “What does this mean?”. He began to describe the condition… paralysis, no bowel and bladder control, 50% chance of mental retardation, those without mental retardation likely will have learning disabilities. Based on the ultrasounds I had, the baby appeared to already be paralyzed. Our baby had a third of his spine open. His first surgery would be within hours of birth to close his open spine with his second surgery happening a few days later to insert a shunt to drain the fluid from his brain. The list went on and on. My doctor remained very neutral in describing our options and then gave my husband and I time to discuss what to do.
As the doctor left the room, I remember sobbing about having two other children to consider. My husband left the exam room to use the restroom. The nurse and ultrasound technician did not notice that he had walked out, and he overheard them discussing that our baby’s case was “the worst they had ever seen.” When he returned, we discussed our options. For me, the choice came down to not only the pain and suffering our baby would endure, but also the life that my other children would have. I imagined their happy, carefree childhoods being replaced with childhoods spent in waiting rooms and doctors’ offices. I imagined my sick boy in watching his older brothers run and play, something he would never be able to do. It was not the childhood I wanted for any of my children. I also knew that, as older parents, there was always the risk that we would not be alive as this child grew into adulthood and that the burden of his care would fall onto my other children. My husband’s reasons were different. He imagined the financial burden, the problems of finding a wheelchair accessible rental house when we moved every three years, as well as the sadness of our child never being “just another kid on the playground.” I was the first to suggest that we terminate, and my husband agreed.
Our MFM gave us the card of a doctor he recommended. There was no one locally that could help and we would have to travel four hours away. I could not bring myself to make the call so my husband had to do it. The appointment was made for Monday, three days away. Luckily, my parents lived in the city we had to travel to, and my mother was able to watch my other two children, so we had a few less things to worry about compared to many others. My OB called me at home that evening to tell me that he thought we were making the right choice.
There is no need to describe the following days. I cried, hugged my living children, and reached out to other women who had made a similar heartbreaking choice. The first moment worth noting was that the doctor, while performing the state required pre-abortion ultrasound, was able to note even further problems with our baby. The other moment that stands out in my mind was when the nurse entered the room and told us “Good news! You weren’t as far along as you thought you were. The price will be $500 less.” The irony was that I knew exactly how far along I was, but because their defining measurement was the head size, I appeared to be three weeks earlier than what I told them–because my baby boy’s spine was severely compressing his cerebellum, causing his head to be misshapen and smaller than it should have been.
That evening, a neighbor (who had been through something similar years before) brought me a teddy bear and a tiny blanket so that I would have something to hold while I grieved.
When everything was done, we returned home and tried to return to normal life. There is no such thing after something like this happens. We worked to find a “new normal.” We explained to our four-year-old that the baby had “bad boo boos” and went to be with Jesus. My heart broke even further as he sobbed, telling me that he wanted to know if the baby would “match” him and his brother.
It has been over 15 months since we made our heartbreaking choice. I no longer cry daily, though I did for quite some time. I still cry fairly often as I think about my baby boy. I see other children that are the same age that he would be and imagine what he would be like at that age. In my fantasies, he is always a healthy baby, like the child I am comparing him to. I have to remind myself that that would not be our reality.
Immediately after the procedure, I felt that I had a hole in my heart that would be there until I held a baby in my arms. I was fortunate enough to become pregnant three months later. This time, I no longer cared if I had a boy or a girl. A healthy baby was all that matter, which I was blessed with nine months later. I now know that nothing will ever fill the hole in my heart, and I will forever grieve for my son regardless of how many healthy babies I have.
It appears to me that most people believe that women seeking abortions beyond 20 weeks do so because they do not want their babies, were careless, are using abortion as birth control, etc. Late term abortions are extremely expensive and trying, both mentally and physically. Most of us using this procedure are doing so because we have received terrible news at the standard 20-week anatomy scan. Most of us want and love our babies more than anything, and we choose to take on the suffering to spare our babies from suffering themselves. The experience changes us and stays with us for the rest of our lives. I know many pro-life activists will disagree with our decision because our baby’s diagnosis was not fatal. In our hearts, we knew that the life he would have had would not have been one we would want to live ourselves, much less want our child to live. We would have given absolutely anything to be able to “fix” him. I think about him and miss him every day, and expect to do so for the rest of my life.