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On Dec. 18, 2014, in Fargo, North Dakota, I walked drugged and disoriented through a hospital hallway decorated for Christmas. Music played — maybe from a piano, maybe over the PA system. I couldn’t tell. A few hours earlier, my newborn son had passed away less than 30 minutes after I had given birth. Shortly after that, I suffered a severe postpartum hemorrhage and a near-death experience.
Two liters of blood later, there I was, barely alive and walking through a holiday fog, wishing that I wasn’t.
A woman touched my arm and said, “Your pajamas are cute.” I wanted to vomit.
Our doctor had recommended terminating the pregnancy after we received devastating test results. However, by the time we had a confirmed diagnosis, it was legally too late in my state to do so. I had no choice but to carry a baby I knew would not survive until I reached 37 weeks of pregnancy, when induction was possible and a care team could be in place.
Babies don’t wait. Three days shy of 37 weeks, my water broke. Delivering my son nearly cost me my life. In that hospital hallway, although I’d physically survived, something in me turned off so I could mentally survive. It stayed off for almost a decade.
When you’re scheduled to see a maternal-fetal medicine specialist the morning after “abnormalities” are discovered during your ultrasound, it’s usually not good news. I had already spent the night Googling the markers that appeared on our anatomy scan, and I had made a diagnosis myself: Trisomy 18 or Trisomy 13.
This was my second pregnancy — the first had ended in a late miscarriage — so I agreed to amniocentesis. Within days, it was confirmed: Trisomy 13, also known as Patau syndrome, which is a genetic disorder involving three copies of chromosome 13 instead of the usual two. The disorder causes life-threatening physical and developmental problems, and roughly 85% of these pregnancies end in miscarriage or stillbirth. Roughly 90% of babies born with Patau syndrome will die during their first year. I was 24 weeks pregnant when I learned of my baby’s condition.
My MFM specialist was clear that he’d support whatever I decided to do, but his recommendation was to terminate. I was past the cutoff to end my pregnancy in North Dakota, so I would need to travel to Boulder, Colorado, to one of the few clinics left in the United States that perform this kind of procedure.
Insurance wouldn’t cover that, so I would’ve had to pay for everything entirely out of pocket. It was explained to me that these terminations weren’t the violent, graphic act often plastered on “pro-life” posters, but merely an early induction and delivery, with palliative care for a baby that wouldn’t survive. I considered it, but aside from the cost, the potential risks involved also terrified me.
“Every week that passed was both a quiet celebration that maybe we’d be in that 10% of families with babies who survived beyond a year, and a silent wish for a miscarriage if we wouldn’t be.”
I was becoming increasingly ill, and eventually developed cholestasis and high blood pressure. Every week that passed was both a quiet celebration that maybe we’d be in that 10% of families with babies who survived beyond a year, and a silent wish for a miscarriage if we wouldn’t be.
The anticipatory grief and planning for an infant who won’t survive is its own special kind of hell. Going to work and running errands as a young woman with a baby who will die is torturous. That’s when I’d hear the well-intentioned but agonizing comments: “Everything happens for a reason.” “Miracles happen.” “Maybe another baby is just around the corner.”
One person told me, “So-and-so’s ultrasound said boy, and they had a girl,” as if it were 1980, not 2014 — as if a fatal chromosomal disorder were a clerical error. A colleague had even suggested to me that I may not want to take maternity leave, as if giving birth didn’t count if there wasn’t a baby to bring home afterward.
I cried in a bathroom stall almost every day. One afternoon, after pulling myself together to meet a client, a woman in the lobby scanned my body and said, “You’re so lucky.” I wanted to hit her. What I was living felt unbearable.
My water broke at one of many routine appointments. I was so violently ill by then that I required a C-section — but because another woman with a viable pregnancy needed one as well, hers was prioritized to reduce risk to her baby.
It was silent in the room when my son was pulled out of me. He couldn’t cry, open his eyes, or move. I held him while the nurses occasionally checked his pulse. After 30 minutes, they called the time of death. I was able to hold him, and insisted that my family come in one by one to do so as well. We’d already determined that the funeral home would pick him up, rather than keep him in the hospital morgue overnight.
A dead infant, especially your own, isn’t an image you ever forget.
Just hours later, nausea overwhelmed me. I asked everyone to leave the room, and then suddenly, I couldn’t breathe. Everything after that is a blur. I remember fragments: hands all over me, being in the desert, being in the hallway, floating in the room outside of my body. At some point, I believed I was going to die and simultaneously understood I was being told to go back. I awoke in a panic, tearing an oxygen mask from my face. A nurse told me to keep it on and that I was headed for emergency surgery. I had suffered a severe postpartum hemorrhage and lost more than two liters of blood. Though surgery was ultimately avoided, I needed a blood transfusion to survive.
The days after that set the tone for years to come. My life was mechanical, task-oriented, and a perpetual cycle of anger and numbness. There were so many things to do and documents to complete to keep me busy during the first few weeks. My body was postpartum and confused without a baby, and that in itself was painful and confusing.
I was pregnant again within months, and the well-meaning questions and comments continued during that pregnancy, including, “Is this your first?” “How many children do you have?” “You’re so tiny, but you won’t look like that after you have a few!” I learned how to answer based on whom I was answering, but it was always awful.
It’s been a little over a decade since my son died, and the dissociation that once helped me survive has started to fade. For many years, I could only think about what had happened abstractly. I could not mentally go back to that hospital room.
Courtesy of Melissa Schmitt
I had two healthy sons, and I tried to raise them with as much normalcy as possible after experiencing that kind of trauma. The pandemic arrived, and all of the grief resurfaced again. I’ll likely continue to have nightmares for the rest of my life.
I still have friends and family who think abortion bans are merely theoretical. They can’t comprehend that even if I chose to continue the pregnancy — which I did because there were no other realistic options available to me — others shouldn’t be forced to make the same decision. No mother’s life should be put at risk. No one should have to wait their turn for a C-section because a baby that they had no choice but to deliver won’t survive. On a human level, it’s devastating, on a systemic level, infuriating, and on a narrative level, it’s a story that demands to be told. It’s a story that’s often met with “You’re so strong,” but I disagree. What’s the alternative?
I earned a master’s degree and became a nationally board-certified health and wellness coach. I can finally articulate what happened with some semblance of perspective and not simply pure anger, even if, at times, it still feels like it happened to someone else.
I never wished to be an authority on this topic, but I am. The overturning of Roe v. Wade, the isolation and public health issues the pandemic raised, the encouragement from my professors — all of it awakened something in me.
In the years since my tragedy, this country has moved even further backward. Many states have enacted total or near-total abortion bans with no exceptions for fetal anomalies. What happened to me in the hospital was covered by my insurance, but I often wonder what would have happened had I gone to Boulder? What if I hadn’t pulled through? What if I had needed a hysterectomy to stop the bleeding? What if I didn’t have insurance or support?
There’s so much work to be done, and now, thankfully, my voice is strong enough to use. I have never asked, “Why me?” Instead, I want to know “what can I do with what I’ve experienced?” I hope my story might make a difference in some way, perhaps starting with helping even one person expand their understanding.
Melissa Schmitt is a National Board Certified Health and Wellness Coach (NBC-HWC) based in Wisconsin, where she lives with her two sons. She holds certifications in Sustainable Nutrition Planning from Harvard Medical School Executive Education and Lifestyle Medicine for Coaches from Wellcoaches. Her writing explores maternal health, reproductive justice, and policy reform through the lens of lived experience and systemic change.
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