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 son was diagnosed with a significant and severe brain abnormality called Alobar Holoprosencephaly, meaning the brain did not divide into the normal two hemispheres. As a result (in our case) in addition to massive brain damage, major system malfunctions, everything along the midline of the face is affected. Closely set and bulging eyes and a lack of 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 HPE, 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 it’s axis I was sure it had done so because time seemed to stand still.
We were told that these cases are devastating, that 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 MD 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 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 knew would be unspeakable pain and suffering, we made the decision to interrupt the pregnancy and to terminate. 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. There was NO question in my mind that I could NOT handle being on a Labor & Delivery ward and delivering 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. 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.
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 9 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. To this day I am unabashedly honest about our experience and I refuse to lie to make someone else feel ok. I will not support the notion that certain types of loss are more worthy of acceptable and grief.
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, my son.
In the days and weeks that followed I would have to face all of the things women face post birth (milk dropping, breast engorgement, bleeding, hormonal fluctuations, uterine twitching, etc) but with no baby in my arms.
We would be kicked in the face again when we found out we had a genetic marker for this abnormality that we were unaware of. We would have to face a 50/50 chance of recurrence with every pregnancy. With no chance of affording IVF with PGD to eliminate the risks we rolled the dice one time and happily welcomed a healthy daughter in 2008. The ONLY reason I had the strength to face the risk of a recurrence was knowing the amazing care I had gotten from my doctor at the single most devastating moment if my life.
I am the 1 in 3. I am just ONE of the faces of abortion. I support a woman’s right to choose with no qualifiers, no restrictions, and no judgements. Until you have walked a day in another persons shoes you have no right to determine what is best for them. Choice for one, choice for all.