The war on women in the current climate in the USA has compelled me to share what is undoubtedly the hardest, most painful point in my 38 years.
In 2013, I married my best friend. He had a beautiful daughter, as did I, but we desperately wanted a baby. A baby that was ours and a sibling for our girls. We tried. Oh how we tried. Ovulation kits, planning sex, and finally a round of Clomid. We were so blessed to get pregnant on that first medicated try. At 11 weeks I had NIPT testing which came back all clear for any anomalies, and told us that we would be having our little pink caboose. It was a girl. I was ecstatic! We named her and all was right with the world.
At 20 weeks, we went in for our ultrasound to check on our daughter, and count fingers and toes. Her daddy met me at the doctor. We had the scans and then were seated in a room for the doctor to go over the results. But I never expected to hear what my sweet O.B. said next. He looked at me and I just knew.
He said, “There’s something concerning. She has a two vessel cord and her kidneys are enlarged and ecogenic (bright).”
We were sent to a hospital an hour away to a Maternal Fetal Medicine specialist who confirmed that our daughter, who we tried so hard for and prayed so hard for, had ARPKD: a recessive genetic mutation that made her kidneys grow at a rapid rate, and full of cysts. She likely wouldn’t have room for her lungs to grow, and if she did somehow survive, she would have to have dialysis, spending at least the first year of her life in the hospital, and an eventual kidney (and likely liver) transplant. The doctors weren’t optimistic. They suggested termination, though by this point we were past the term limit for my state. We were also told that ANY baby we had together had a 25% chance of being affected by this disease as well.
My husband and I did not choose to terminate. We, together, decided that we would give her every fighting chance to live and we tried to carry on as best we could for the next phase. We live in the Deep South, and abortion is very taboo here, judged, and my state just passed a law that effectively bans abortions with NO exceptions.
At 30 weeks, on a Sunday morning, I went into labor. 48 hours later I had an emergency C-section under general anesthesia. As soon as they pulled her out, they brought my husband into the room. She was blue, she wasn’t breathing, and she was the most beautiful little blonde baby I’ve ever seen. My husband watched as they did CPR, put in a breathing tube (amongst many many others) and eventually, when I was awake, my bed was rolled to the Level 1 NICU, where my beautiful little 3-pound daughter would “live” out the remainder of her days.
For four days she fought. She was poked, prodded, put on a breathing machine (her lungs were very underdeveloped), and made zero urine. At 2 a.m. on December 5, 2015, we were called to the NICU because she was dying. When the time came when they would need to start CPR, I refused. I know that may be confusing for you. You see, I am a nurse. I have seen more death than anyone ever should, and yet I KNOW that sometimes, it’s the kind and compassionate choice. I chose to stop lifesaving measures and held my baby for the first and last time as she passed away.
My story is sad, and it’s heartbreaking, and it’s more common than you would believe. While I didn’t choose to terminate, I would NEVER take it upon myself to tell another mother in that situation what is best for her life, family and heart. Because until you’ve been faced with hearing “Your baby will die, and she will suffer until she dies,” the plain truth is you just can’t know.
I did not go on to have more children. I had a hysterectomy two years later and we are still healing every day.
We MUST have choice. We MUST fight to keep termination safe, accessible, and LEGAL.
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