By: Amy Z.
What a crazy week! We spent our baby moon in San Diego visiting my husband’s family. While there, my husband felt our baby kick for first time. We came home in time to see some 4th of July Fireworks (I’m kinda a firework fanatic). After two miscarriages, a chemical pregnancy and a vanishing twin, we decide to take the social media plunge. Using some of our baby moon photos we announce our baby girl on Facebook. Friday wasn’t even a full work day. It was actually our 24 week ultrasound appointment, even though we were 25 weeks along. The ultrasound has the same results as the 20 week ultrasound… our doctor is having trouble reading the baby’s head size. We would have to get an appointment with a Maternal Fetal Medicine group for a better look. Of course, that couldn’t be until the following week.
My little girl fluttered all weekend in my tummy as if to tell me she was just fine and that it would be okay.
Monday was a normal day for me, but it was my husband’s first day at a new job. Our appointment was Tuesday morning. I went to work. I had to mention my appointment to a few people but told them I would be back afterwards. Four weeks later counts as after, right?
My mother met me at the hospital. The ultrasound technician is friendly. She has a student in training with her. After a while, the chatter lessens and she excuses herself to discuss the results with the doctor. The student takes over repeating the measurements and taking 3D photos for us. The doctor comes in. I don’t remember how they broke the news of anencephaly. I do remember the student’s terrified face, as the happy visit took a hysterical turn. I decided to risk premature labor to have an amniocentesis to confirm the diagnosis and for genetic testing. We sat with a counselor that was explaining genetics to me. Luckily, I already knew genetics because I wasn’t in a state to comprehend much of anything.
What were my options? Carry full term or travel out of state for a late term abortion. Carry the baby 3 more months, with people joyously inserting themselves into my life because they assume pregnancy is happy for everyone.
Maybe the baby wouldn’t survive 3 more months. Likely, the impact of birth on the unprotected brain stem would crush it, ceasing the heartbeat. But what if she survived? Would she gasp for air while slowly turning blue since her lungs probably wouldn’t work? She had stopped swallowing amniotic fluid which is a precursor for breathing. Would a hospital forcibly hook her up to a breathing machine to keep her alive? She couldn’t swallow so there would have to be a feeding tube. A permanent feeding tube.
Out of state late term abortion. My state doesn’t allow for any abortions outside the first trimester. The doctor’s office gave me a few leads on clinics but no information about the process. Turns out, each clinic is different. Each State is different.
By Friday, I was on both an anti-depressant and anxiety medication.
I later met a lady in my support group who also had an anencephalic diagnosis and chose to carry to full term. I applaud her for it. She was and is an amazing person. What a hard road, but she was younger, it was her first pregnancy, her family hadn’t been through many many years of infertility resulting in zero grandbabies and she had this amazing gratitude for the extra time she would get with her daughter. Extra time that to me and my family would have been devastatingly torturous.
In my grief, I could only think about how I had failed, again. How my body had failed me.
How my mother in-law was going to lose another grandchild, but this one was that extra special girl she had always wanted. Somehow, even in their grief and with their strong Catholic faith, they supported me, emotionally and financially, out to Albuquerque, NM where I could have a Termination for Medical Reasons at any time in my pregnancy. The only catch was that the fee increased with the size of the fetus. That and the procedure only started on Mondays.
It was Friday and I had to make a decision. Not just any decision, an expensive decision. Financially, emotionally, spiritually expensive decision. I started having contractions at night; possibly labor; possibly triggered by the amniocentesis. We could wait it out and maybe deliver locally at a hospital or maybe the contractions don’t lead to labor for another 3 months where I would still have to deliver at a hospital. Would the hospital honor my wishes or try to keep my little girl “alive?” If I didn’t register that day, make travel arrangements, then we would miss next week’s window and likely pay more for the same procedure the following week. The contractions continued (only) at night all weekend.
Monday morning, I called my doctor one more time about my options… She didn’t offer to champion to the hospital’s board for an induction. My mother and I boarded a plane to Albuquerque. My husband returned to day 6 of his new job with plans to join us on Wednesday.
Tuesday was a long day. Hours and hours of one on one counseling. I had to convince them that I came to the decision on my own and that no one had coerced me into it. A decision I had made with my husband and for my family, I had to take sole ownership.
My contractions continued. The clinic performs an ultrasound to confirm the medical diagnosis before giving her the injection to stop the heartbeat. My water broke. They gave me medicine to help me dilate and sent me back to the hotel.
I woke up while it was still dark out. We called the emergency number for the clinic. They sent someone for us. An hour later, she was born with two small pushes. My husband and his mother arrived later that day. He and our mothers chose to view our baby, but I do not (or cannot). The clinic taught me and made me practice how to answer questions about the pregnancy loss in three statements. 1. The baby was sick. 2. She didn’t survive. 3. I do not want to talk about it. The clinic arranged for photos, hand and footprints, and the baby’s cremation. Thursday, we picked up her ashes from a local funeral parlor and her memory box from the clinic.
Friday, we returned home. I spent the next month home from work trying to reconcile my new still baby less reality.
The biggest lesson I have learned since then is that the clinic was far better equipped to handle this situation than the hospitals I have encountered. I teach other women how to answer questions about loss. I have a box of mementos that I was able to share with other family and friends. I have my baby’s remains even though I still haven’t decided what I want to do with them. Ultimately, I am forever grateful for their amazing care, understanding and thoughtfulness.
About Amy Z.
Amy Z. is a Saint Louis native. She and her husband experienced their first miscarriage 6 months into their marriage. It was followed by 2 more miscarriages, a chemical pregnancy, a vanishing twin, an anencephalic baby and finally beautiful Rainbow baby at 39 months into the marriage. She and her husband used the time to explore alternative medicine and grow spiritually together. She hopes that sharing her pregnancy and subsequent healing experiences helps others experiencing the loss of a loved one.
These are controversial topics and many that people don’t realize other families face.
Share’s mission is to support those whose lives are touched by the tragic death of a baby through pregnancy loss, stillbirth, or in the first few months of life. Share does not take a political stand on these issues. Share is not responsible for guiding or counseling families in their decision-making process. We all grieve and mourn for our babies. Some of our parents have had to choose the day that they were going to lose their baby. But the truth is still: each family wanted and love their babies. We all search for support, healing and hope. All grieving parents deserve that.
As a support organization it is always our goal to provide a safe and compassionate place for every family who has suffered the great loss of their baby.
We hope this conversation allows for continued healing and an understanding from others of the great need for long-term support for every family making difficult decisions. If you are in need of support after making the decision to terminate for medical reasons, please reach out to our Bereavement Care Manager at firstname.lastname@example.org or call 800-821-6819.