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“We do not all fit into a neat little box for you to decide our individual fates.”

by Anonymous

December 14, 2023

When I was 16 weeks pregnant, my husband and I anxiously awaited the results of genetic bloodwork for our second child. We told EVERYONE to expect an announcement soon: boy or girl! I found gender reveal cookie recipes online. We waited patiently, and imagined what life would be like for our new family of four. How Charlie, our 20-month-old first born, would be with a new sibling? What if it was a boy? Would she like having a little brother? What if it was a girl? How fun it would be to have a sister!

We planned our entire life in the span of just four months. And for anyone who has ever been pregnant, you plan your entire life the second you see that plus sign on your pregnancy test. We were overjoyed.

On September 11, 2023 we got a call from the genetic counselor at MUSC. Our genetic test results came back abnormal. They found something called trisomy 18. She said words like “genetic defects, brain and heart abnormalities, malformation of the hands and feet.” Then she said, “babies with trisomy 18 typically do not survive.”

And in THAT instant, our entire life changed yet again. It didn’t matter to us in the slightest if this was a boy or a girl. (It was a boy, by the way). We held out hope, of course, because…well you have to. I would go on to have an amniocentesis, additional ultrasounds, and many conversations with the doctors and genetic counselors at MUSC. We poured over the internet to learn more about trisomy 18. We looked for the success stories. There was an obvious, and deafening, lack of those.

According to the Minnesota Department of Health, 50% of babies who are carried to term will be born alive. The median of survival among live births has varied between 2.5 and 14.5 days. About 90% – 95% of babies do not survive beyond the first year and many live only a few days.

At just 17 weeks, multiple fetal anomalies seen could be seen on ultrasound for our little one: bilateral choroid plexus cysts, suspected cleft palate, suspect heart defect, echogenic small kidneys, abnormal feet, and Dandy Walker malformations (which affect the cerebellum, the area of the brain that helps coordinate movement, and is also involved with cognition and behavior).

We considered these facts. We cried over them. We cried a lot. We envisioned our lives if the baby was to be born alive. We discussed the emotional, psychological, financial, and social impact of delivering a baby who, even if he did survive, would likely go on to have an incredibly poor, and agonizingly short, quality of life. We considered how Charlie, our daughter, would have to wonder why mommy and daddy were so incredibly sad. Why other family members and friends were taking care of her because mommy and daddy seem to be in the hospital all the time.

And with each day that passed – as we considered these things, discussed, and cried together – I held my belly, which was already pronounced at just 16 and 17 weeks – and I said, “Hey little guy, I promise to love you and protect you just the same.” And we made the impossible decision to protect him, and our family, by terminating the pregnancy.

We live in Charleston, South Carolina. At the time, the law stated that “Abortions may not be performed in this state after a fetal heartbeat has been detected, with exceptions for medical emergencies, rape, incest, or fatal fetal abnormalities… ’Fatal fetal anomaly’ means that, in reasonable medical judgment, the unborn child has a profound and irremediable congenital or chromosomal anomaly that, with or without the provision of life-preserving treatment, would be incompatible with sustaining life after birth.” Well, in our hearts and minds, we met that criterion, right? But our doctor insisted that the laws and requirements are simply too rigid. The risk for her and her practice, legally, was too high. And we understood that. We do not fault her for saying (and lamenting the fact that) no, we could not abort here in our hometown.

To make the decision to abort was, undoubtedly, the hardest thing my husband and I have ever had to do. And yet, we are among the fortunate ones. Pat and I are objectively among those with privilege. We were able to secure services back in Baltimore, Maryland, where we are from. Sure, we spent nearly $1,000 on flights (because we could afford it), but we were also able to stay with family during our time there. Our sweet Charlie, who stayed in Charleston during our trip, was under the wonderful and loving care of close friends. We were treated with respect and dignity, kindness and empathy by the medical professionals at University of Maryland Medical center. Those around us have been supportive and non-judgmental.

But again, we were fortunate. I imagine so many other women and families having to stay in a hotel, pay for childcare, may pay for termination services out of pocket. And let us not forget those who – on top of these financial constraints – might have been met with more shame, judgement, or even anger by those around them.

I’m writing all this because I’m angry. (On top of all the other complex emotions that have consumed me during the past two months). Choosing to have an abortion is torture. I didn’t WANT to have an abortion. But because we knew that, either way, we were facing a tragedy, my husband and I believe it was the only humane thing to do. That may seem contradictory to those who are pro-life. I understand. And I would understand your decision to carry your trisomy 18 baby to term. I would respect your decision.

But I’d like to emphasize the word “decision.” It was not an easy decision, but it was ours. Our doctor, who cried with us when she delivered those last ultrasound findings, told us that she would soon be having to take her very sick husband off life support. And we – the law – grant her, and others in that situation, that right. I would be able to take my living child off life-support, regardless of their age, if it was deemed medically necessary. And yet, in my state, I am denied the right to take my unborn, 18-week fetus off life support although he would have had a tragically short and poor quality of life.

Yes, I still refer to him as “he.” This was very much a bourgeoning soul that was a part of me. But again, he was a part of ME. He was mine to protect. And you will never be able to tell me that what I chose to do was anything short of a mother protecting her children – both living and unborn – from suffering.

My husband and I are moving on, although the pain of loss live with us forever. We are healing, although we will always wonder “what if?” I want others to hear our story, so that those in similar situations feel heard, understood, and supported. And I want those individuals in charge of making laws regarding reproductive rights for women to understand that we are real people with sound and valid rationales behind our choices. We are supported by our doctors, who feel just as frustrated by the limitations of not being able to serve their patients, as we are to not be given the respect of making decisions for ourselves.

We do not all fit into a neat little box for you to decide our individual fates. Lawmakers, I beg you to simply not deny individuals’ rights based on your own values. I ask you to have mercy on those with less fortune than my husband and I. Do not pass judgment on their decision-making, but rather grant them – and individual healthcare providers – the dignity of deciding what is right for that person or family.

Remember that our stories are ours to tell. We’d love to hear your story too!