This is the only "bump" picture I have left. The rest were erased, in a purge that I thought would help me heal.
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I think sharing my story will help, too, and not just me. I want to shed some light around a "choice" I hope you continue to have the right to make — without ever being put in the position to make it.
On Tuesday, May 16, I went to the hospital in Doylestown, PA for my 20-week anatomy ultrasound. I was anxious to hear if the tech could see the sex of our baby, in anticipation of the little gender reveal we were planning for that Friday. It’s kind of comical in retrospect — the dozens of pink and blue mardi gras beads that are still sitting in the Amazon box by the front door.
My younger sister, Sabrina, came with me to this ultrasound (I'd already had a few), but after I thought we were done, and the baby's sex was given on a little piece of paper to pass along to my friend for safe-keeping, I told Sab she could leave. I didn't know at the time that an ultrasound technician can’t say if they see something abnormal; the doctor has to do that.
I was alone by the time I was called back into the room to repeat a portion of the ultrasound with the doctor, and that's when my heart started racing. I knew something wasn't right, and sure enough they asked me to step into the office to discuss what they had seen.
After ushering me to a seat next to a strategically placed box of tissues, the doctor closed the door. It was painfully obvious this wouldn't be good news, and I regretted letting my sister leave, and not having my husband there with me. Our baby had enlarged ventricles in the brain, the doctor said, almost double the size they should be. There was fluid surrounding them, and at that point, we couldn't know the cause or the potential outcome. It was what they call a "gray diagnosis"— severe ventriculomegaly.
The doctor said everything could be normal or it could be "very, very bad." I remember wishing for more concrete information — maybe an explanation as to that second "very"— but was referred to a specialist to get a more detailed ultrasound, an echocardiogram, and a fetal MRI.
We were told we'd have to wait two-and-a-half weeks for an appointment. I spent those days frantically googling, a well-known form of self-inflicted torture, to understand possible prognoses. I learned that this is one of the most common birth defects, and, if isolated, everything could be okay. I hoped against hope that was the case for us. Then, the office had a last-minute cancellation on May 24, saving me from another 10 days of Google spiraling.
When appointment-time came, my anxiety was somewhat dulled by the staff's kind bedside manner and efficiency of swiftly moving through each test. That is, until the ultrasound. The ventricles had grown, and the size of the baby's head wasn't in proportion to the rest of his body. (Yes, he was a boy — break out the blue beads.) His femur measured at the 30th percentile, while his head was measuring at the 94th. My husband and I sat in the waiting room for what seemed like an eternity (in reality, an hour and a half). Two other couples came out in tears before it was our turn to review the findings with a trio of doctors. We didn’t want to go in, we already knew.
But just when you think you've prepared yourself for the worst, the other shoe drops. The ventricles had grown because the cerebral aqueduct, which allows for the fluid to drain, was likely blocked. This resulted in what's called severe hydrocephalus (fluid on the brain), and the pressure of the ventricle being so enlarged resulted in destruction. They told us the cerebellum was underdeveloped, and there was another portion of the brain that they couldn't see, also likely due to it having been destroyed.
The baby also had not developed any eyes, and there were several anomalies in the thoracic vertebrae of the spine. One doctor thought there must've been an underlying genetic mutation causing all of this wayward development.
The brain malformations alone would result in an array of dismal prognoses for our baby — severe mental and physical disability, a feeding tube, seizures, and the inability to ever be a functioning adult, requiring a lifetime of constant care. The lack of eye development would further exacerbate the mental handicap, and require surgeries to simply build eyes that would never function. And then the spinal issues would, while also limiting motion, have neurological effects. The baby would never have any semblance of a quality life, if he even survived at all — if the mutation was a specific x-linked dominant gene, it would be fatal for our little boy.
Having previously talked about a range of possible outcomes, my husband and I didn't even need the doctors to leave the room. We already knew the decision we had to make, however gut-wrenching and heartbreaking it was: termination.
Sparing you the gruesome details, it was a three-day process from May 30 to June 1, which included having an amniocentesis and other tests to identify any genetic mutations. That's how they know if this is likely to happen again. Those three days were (despite the numbing powers of painkillers and anti-anxiolytics) the most mentally and physically taxing of my entire life. When I close my eyes, I can still feel every poke and prod, and my eyes instantly well up in tears.
For the final procedure, a dilation and evacuation (or D&E), I was under general anesthesia, and the rest of the day I felt kind of dazed, almost as if there was a little relief that it was all over. But here I am in tears once again. I want to feel like myself again. But, some days, it is emotionally exhausting to simply exist. One week after the procedure, my milk came in, as my body was still expecting there to be a baby to feed. Initially, I couldn’t talk to people about it at all without breaking down.
After a few days spent mostly sleeping and/or staring aimlessly at the television, I reemerged at work, but social gatherings have been a little more challenging. The simple question of "How are you doing?" has the potential to trigger more tears. Not knowing the hows or whys of what happened is something I struggle with daily.
I hope sharing this will be therapeutic for me, as well as for anyone else experiencing anything even remotely like this. I’ve joined a few Facebook groups looking for comfort, and found many people who say they told friends and family that they “lost the baby." Everyone grieves differently, but the underlying message is that many moms feel embarrassed or ashamed of their decision, afraid of what people might think. A people-pleaser at heart, this could have been the route that I chose. But I know we made the right choice for our family, and I believe that I’m experiencing this suffering so that our baby wouldn’t have had to endure so much more.
Im also sharing my story as a word of caution: Blood work for screenings can come back normal (excellent in my case), and things can still go terribly wrong. Women and families who are thrilled to be expecting a baby may quickly assume they're in the clear as a result of these initial screenings and get wrapped up in the fun of it all — what will be the theme of the nursery, when will we go Facebook-official, how should we announce the sex? We take for granted, or don't realize, that some anomalies are not detected until further along. To say I learned this the hard way would be grossly minimizing what has actually occurred.
And that brings me to my primary motivation for sharing. While I’ve always tried to be respectful of a woman’s right to choose, I never thought that I’d terminate a pregnancy — planned or unplanned — and certainly not one thats one day shy of 22 weeks gestation. I never thought I'd be in this situation, but here I am, now one of the faces of late-term abortion: a happily married 33-year-old woman, ready and excited to start a family.
I live in a state that allowed me to make this painful choice, at least for now, however there are almost a dozen-and-a-half states that would have forced me to proceed with this pregnancy because I was beyond 20 weeks. And the future of this kind of healthcare is constantly being threatened. In fact, a bill passed Pennsylvanias state Senate this February to move the 24-week cutoff for all abortions up to 20 weeks, while another one proposes a full ban on the D&E procedure (the kind I had, which is most often used in second-trimester abortions). That means, by the time I found out about my son's grave condition, it would've been too late for me to receive care. Had we been less lucky with scheduling, I could've been too late under the states current laws.
Anti-choice lawmakers try to skew public opinion, as if people frequently and arbitrarily elect to go through a highly invasive surgical procedure after not really thinking about being pregnant for a full five months. But the reality is that only 1% of terminations occur this late in pregnancy, and most of them are, like ours, due to serious birth defects that weren't detected earlier, or a threat to the mother's life. These proposed new laws make no exception for survivors of rape or incest, nor experiences like mine, when staying pregnant can feel like prolonging tragedy. They are heartless.
The icing on the cake is that, regardless of the reason for a termination, the procedure isn't covered by most insurance companies. The $1,200 charge from the hospital, promptly processed as soon as I provided a credit card number, was a little extra "f--- you" after an already atrocious few weeks. (This was "cheap," apparently, because our hospital negotiated better rates. We'd also pay an additional $1,200 for genetic testing, but were spared the astonishing $16,500 worth of diagnostics that my insurance covered.)
I can't imagine how much worse it would have been had I been forced to travel to an unfamiliar city, stay in a hotel throughout this instead of seeking comfort at home, and even face ignorant protesters judging me for a decision they couldn't possibly understand, and one I never wanted to make in the first place. To me, there was no choice: I wanted a baby very much. I wanted this one, but I couldn't subject any child to the life he was going to lead.
This has been, by far, the darkest and lowest point in my entire life, and I know the pain, anger, and bitter feelings aren’t going away overnight. I'm comforted, some, by the hope that my story underscores the urgent need for comprehensive prenatal education and reproductive rights — for everyone, in every state. The heartache of potentially having lawmakers take this choice out of womens hands only intensifies the heartache of not being able to build the family you've been dreaming of.
And despite all I've been through, I'm still dreaming of mine. Every day I yearn for what had been a small but growing bump, and the little flutter kicks that had only just begun. But for now, those pink and blue mardi gras beads will be packed up and saved another day
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