In 2006, my husband and I were pregnant with our first child. All of our early screenings and tests were going fine with no signs of complications. It was at the 20 week level II ultrasound that instead of finding out the sex of my baby, my life changed forever.
The ultrasound tech was quiet….too quiet…and avoided answering questions. She stoically said that the doctor would be in to “go over everything.” My heart dropped through the floor. Something was wrong. I just knew it. A mother always knows.
Our baby was diagnosed with a significant and severe brain abnormality called Alobar Holoprosencephaly, meaning the brain did not divide into the normal two hemispheres. In our case, in addition to the massive brain damage, major system malfunctions and everything along the midline of the face was affected. Closely set and bulging eyes and a lack of a properly formed nose. In its absolute worst manifestation this abnormality can result in a child with one cyclopic eye. While there are milder forms of holoprosencephaly, the end of the spectrum we were on was described to us as “devastating and incompatible with life.”
If the earth could have stopped rotating on its axis, I was sure it had done so because time seemed to stand still.
We were told that these cases are devastating, our baby would die soon after birth IF I made it to term, that they had no explanation for why I had not miscarried earlier, and that the vast majority of these cases are random, sporadic events, with a small chance of a genetic marker being the cause. We made the decision to have an amniocentesis on the spot “just in case” and sent cells out to a lab in Maryland that specializes in genetic testing.
Our hearts were broken. We were referred for an immediate 2nd opinion, and within an hour were given the same diagnosis and prognosis. We went from thinking we were going to find out the sex of our child to having to make the most difficult decision of our lives. We were counseled that the decision was ours, and ours alone, but thankfully we were also given all of the medical facts and realities by specialists in prenatal diagnoses.
For us…it was an obvious, but not easy decision to make. To keep our child from suffering what we felt would be unspeakable pain and suffering, we made the decision to interrupt the pregnancy. But doing so at 20-21 weeks is not a simple or painless process by any stretch of the imagination.
We were given the option to be induced and deliver or to have a D & E termination. There was NO question in my mind that I could NOT handle being on a Labor & Delivery ward and deliver a baby who would die a painful death in my arms. We were referred to a doctor who specializes in 2nd trimester terminations for the D & E procedure.
There was a nine-day gap between the day of diagnosis and the first part of the D & E procedure. These quite possibly were the worst nine days of my life. I didn’t leave the house for fear of having someone ask when I was due. I managed to send one group email out to friends, as I needed people to know, to understand the decision we had made. I wasn’t ashamed, and I refused to lie and say I had miscarried.
On the day of the D & E, what was left of my heart was broken into pieces knowing that the day had come to say goodbye to my first child. I awoke that morning with my heart in my throat and sobbed with every twitch of my belly. The day had come to say good-bye despite begging to have the ability to change the unchangeable….the fact that my child was going to die.
The hospital I was cared for at was one of the best in the nation and my doctor a foremost expert on second trimester terminations. He was an angel of mercy in my book. It takes a very special person to do the work that he has committed his life to doing. This caring man held my hand as I drifted off into anesthesia and brought me fresh-picked flowers from his garden in recovery.
After the D & E , I endured having my milk come in, my body thinking it had birthed a living child that needed to be fed. I wrapped myself as tightly as possible in ace bandages to speed along the process of drying up.
In the days and weeks following the loss of our child we would be dealt one more blow to the heart when we received the results of our advanced genetics testing. Despite incredibly minuscule odds, one of us carried a sequencing error on the ONE gene that accounts for LESS THAN one percent of the cases of holoprosencephaly. The gene is an autosomal dominant, meaning a 50/50 chance of recurrence with each pregnancy. Our healthy daughter born a year after we dealt this devastating news was a true leap of faith and a miracle.
It took me five years to ask for the answer to the question we were seeking at that ultrasound appointment…was it a boy? Or a girl? I finally reached a point where not knowing was bothering me more than the fear of knowing. So I took a breath, called our geneticist and got my answer.
I have always been pro-choice, but this experience pushed me into the pro-choice stratosphere. It’s a slippery slope when lawmakers start specifying the who, what, where, when and HOW’S of the most personal decision anyone will have to make. The only people who should be involved in any portion of this decision-making process are a woman and her physicians.
Pro-life supporters and legislators who insist on setting limits and other “qualifiers” on access to abortion services have a hard time seeing the world of gray that my story represents because it forces them to go to a place where they may have to reconsider their stand. Well, as they say in the movies….”Welcome to My World.” It’s a world I hope you never have to visit.