Her name was Jenna. She was my second daughter, and she was stillborn due to Trisomy 18, a chromosomal disorder deemed incompatible with life. I loved her, but I still wanted to end my pregnancy with her.
It was because of the love I had for her that I wanted an abortion, but I was denied this right due to the political climate in our state. As I held her tiny, lifeless body in my arms after she was born, I vowed I would do something in her name to make a difference, to keep a family from having to go through what we did.
After a routine blood test at 16 weeks showed our baby had a 1 in 10 chance of having Trisomy 18, my doctor set up an appointment the next day with a specialist. An ultrasound showed that our baby had a cystic hygroma (a fluid-filled pocket on the back of her neck which can be fatal on its own), a clubbed foot and growth restriction, as she was measuring nearly a week behind. We had to wait until the next week to do an amniocentesis because the amniotic sac hadn’t yet fused to the uterine wall. While we waited, I researched the disorder. I found the Trisomy 18 Foundation website and connected with other families who had gone through what I did. After the procedure, while we were waiting on the results, my husband and I discussed what we wanted to do if she did have it.
Discussing our options and making a decision were the hardest things we ever had to do. From the research we did, we knew doctors would take no life-saving measures once she was born due to the disorder she had. Our greatest desire was to keep her from pain, but how could we make a decision that would end her life? I was her mother; it was my job to take away her pain and to help her. We decided we wanted to end the pregnancy, or “say goodbye early” as the Trisomy 18 Foundation calls it, through a labor and delivery abortion. With this procedure, we would have been able to hold her, take pictures and have her remains, so we could have her cremated. We would have just a short time to make memories that would have to last us a lifetime.
Even though I knew in my heart she had it, I was still devastated when we received the news. I don’t have a lot of clear memories of that day, except for sobbing and saying over and over again, “She was so wanted. I wanted her to so much.” I didn’t think we would have any problems having this procedure done since abortion is legal in the United States. Even my doctor thought we would be able to do so, at first. When we met with her a few days later, she informed us that due to the political climate in the state, none of the hospitals in the area would allow us to do the procedure. Our doctor recommended we go four hours away to Atlanta to an abortion clinic that deals exclusively with late term abortions. It wasn’t what we wanted to do, but I was desperate to keep my child out of pain and do what was best for her. We made the appointment at the clinic.
We learned we wouldn’t be able to take pictures or hold her or even get her remains. I was devastated, but again, my desire to keep her out of pain overrode anything else. I did not want her to suffer. We were also told we would be separated from the women who were having the procedure done for reasons other than fetal anomaly, and I would qualify for what is known as a one-day procedure.
As we left for Atlanta, I felt like a criminal, sneaking away to do something illegal. I was afraid of being judged for doing what I felt was best for my unborn daughter and my family, so only a few people knew where we were going and what we were going to do. No one should ever be made to feel that way when they are making healthcare choices for their loved ones.
When we arrived at the abortion clinic, we were not separated from the other women. My husband and I sat in the waiting room as it filled with woman who were wanting to end their pregnancies for reasons other than a fetal anomaly. It wasn’t that I wanted a perfect baby; I just wanted one that would live. Here I was, surrounded by women who were carrying perfectly healthy babies, when my baby was dying inside me. If the laws in Tennessee were different, we would never have had to go through that. We could have ended the pregnancy in a hospital with our own doctor and not been subjected to women who had everything we wanted. Looking back now, I can see that those women were just as desperate as I was. Their reasons for aborting were different than mine, but that doesn’t mean they were any less legitimate.
We were called back three times; each time, I thought we would be separated from the other women, but each time, I was wrong. During the time we waited, only two things helped me to keep my sanity: my husband beside me and the book I had brought with me, Harry Potter and the Order of the Phoenix, which was strangely apropos to our situation, as Dumbledore tells Voldemort that there are things worse than death. Finally, after almost four hours, we were told that because of a mistake they made in the paperwork, we would not be able to end the pregnancy that day. If we wanted to do so, we would have to come back a week later. An ultrasound that day showed our daughter had very little brain matter, and the amniotic fluid was even lower than before, confirming our suspicions that her kidneys weren’t functional. Without functioning kidneys to help make amniotic fluid, her lungs also hadn’t developed.
Making the decision to terminate was the hardest thing we ever had to do, and getting up the courage to go to Atlanta was equally difficult. We knew we couldn’t do it again emotionally. We decided to come home and let nature take its course. Each day that I carried her, I wondered if she had died, and I was walking around with a dead baby inside me. Each morning when I woke, I wondered if this would be the day she died. If I hadn’t felt her move for awhile, I frantically called the doctor to see if I could come in to find a heartbeat. Each day was a waiting game, a game filled with tortuous what-ifs and pain. What kind of life could she have if she survived birth? How was this going to affect my marriage? How would our 5-year-old react to losing the sister she always wanted, especially if we were able to bring her home for a few days? I was a basket case. I didn’t eat or sleep. I lost 12 pounds in less than two weeks. Somehow, I got out of bed each morning and tried to make a life for my daughter, even though I felt like I was traveling through mud.
Jenna was stillborn, and I knew she would never suffer. I made a vow to speak out and share our story, to fight laws that will limit a woman’s ability to make healthcare choices for herself and her child. I have debated this topic on the Internet. I spoke in front of our state legislature and made a commercial, sharing our story to fight a prohibitive state law. No shame should be attached to one of the most loving, selfless acts a parent can make with regard to a sick child. If a born child is declared brain dead, parents are allowed to turn off the machines and allow their children to die peacefully. If a child has a terminal illness and all hope is gone, parents can decide to stop treatment. Why couldn’t we make the same decisions for our daughter? Is it simply because she wasn’t born yet?
As hard as I fight for a woman’s right to choose, I would also fight for the opposite – a woman’s right to carry to term. I don’t believe a one-size-fits-all solution exists when a family is facing a poor or fatal prenatal diagnosis. We all love our children and want what is best for them, and we should be free to make those decisions.
Related post: Dear Doctor Performing My Abortion