Tennessee Law Prevents Early Termination

Fetal Trisomy 18 Chromosonal Disorder Fatal?

I was 16-weeks pregnant with our second child, when a blood test to measure the risk of Down Syndrome, Spina Bifida or Trisomy 18 revealed our baby had a one in 10 chance of the latter. A level two ultrasound revealed my child had the fatal chromosomal disorder - three of the number 18 chromosome. The baby was measuring small, a symptom of Trisomy 18, and had a large, possibly fatal cystic hygroma, a fluid-filled pocket on the back of the neck, and a clubbed foot. An amniocentesis would give us the prognosis.

Our doctor broke the news: our baby girl had full Trisomy 18. I left work to tell our five-year-old daughter that the baby sister she had wanted for so long was going to die. We allowed her to name the baby Jenna Grace, because we knew it would be the only tie she had.

My husband and I discussed our options: termination or continuing the pregnancy. As much I hated the thought of ending her life, I hated the thought of her being in pain more. Doctors don't know whether babies suffer pain in utero, but I didn't want to chance it.

But how could I end the pregnancy when she was so wanted? I had always been pro-choice and had said I would end a pregnancy for a fatal diagnosis. It wasn’t about wanting a perfect child or a baby that wasn’t handicapped; I just wanted one that would live.

The Trisomy 18 Foundation calls terminating a pregnancy saying goodbye early; that is what we needed to do. I thought I would be able to go to a hospital and have my labor induced. I couldn’t stomach the thought of having a traditional abortion.

Tennessee State Law Allows Hospitals to Refuse 2nd Trimester Abortions

Our doctor said we couldn't end the pregnancy at a hospital in Tennessee given that State law stated all second trimester abortions have to be done in a hospital, which can refuse to perform a procedure they feel is morally wrong. If we wanted to say goodbye now, we would have to travel 4 hours to an Atlanta abortion clinic with a program for parents in our situation.

When I called, they asked for my weight, height and I was told I would qualify for a one-day procedure at a quoted a price. We left Friday after work in the dark; I felt like a criminal, sneaking away to do something illegal.

We had been told we would be separated from the women who wanted to end their pregnancies for convenience, but we weren’t. We waited as girls came into the room, laughing and happy their pregnancies were over. I wanted to scream, "I will take your healthy babies!"

Three hours after we arrived, my weight retested, the ultrasound nurse said anyone over or under a certain weight has to have the two-day procedure, so I no longer qualified - I would have to come back the next week. We were furious.

To return, we would have to take more time off from work, travel another 4 hours each way, find childcare for our daughter, pay for another hotel, and most importantly find the strength a second time. We needed to let nature take its course and didn’t make a follow-up appointment.

Every day that I carried her was worse than the one before. I imagined she had died and I was carrying a corpse. I woke up wondering if her movement was going to be the last one I felt.

Jenna's Law and Legal Legacy

On August 11, 2008, an ultrasound revealed Jenna was gone. She had died a few days before. We went into the hospital that night and she was delivered the next day. I was able to hold her, take pictures, have hand and footprints made and have her cremated.

In order to work through my grief, I wrote letters to our representatives in Tennessee to make "Jenna's Law" an addition to the current statute that demands hospitals perform terminations for fatal prenatal diagnosis, to save the life of the mother, and in cases of rape and incest.

Parents are able to take sick children off life support. I was Jenna’s life support, and I wanted to remove her to save her from suffering. Health care shouldn't be out of our control. I’m doing this so Jenna's life will matter to other women and children as it did to our family.