Her name was Lily. She was my second daughter, and tragically, she was stillborn due to Trisomy 18, a chromosomal condition considered incompatible with life. I loved her dearly, yet I felt compelled to end my pregnancy with her.
It was the profound love I had for Lily that drove my desire for an abortion, but my right to make that choice was denied by the political landscape of my state. As I cradled her tiny, lifeless body after her birth, I promised myself I would do something meaningful in her name to help other families avoid our heartache.
At 16 weeks, a routine blood test revealed our baby had a 1 in 10 likelihood of having Trisomy 18. The following day, my doctor arranged for us to meet with a specialist. An ultrasound revealed additional complications: a cystic hygroma, a clubbed foot, and growth restrictions—she was measuring nearly a week behind. We had to wait for the amniocentesis until the amniotic sac fused with the uterine wall. In the meantime, I researched the disorder and connected with other families via the Trisomy 18 Foundation’s website. As we awaited the results, my husband and I confronted the painful reality of what we might need to decide.
Choosing our path was one of the toughest challenges we ever faced. We understood from our research that once born, doctors would not take any life-saving measures due to her condition. Our deepest wish was to spare her from suffering, but how could we choose to end her life? As her mother, it was my responsibility to protect her from pain. We ultimately decided to proceed with what the Trisomy 18 Foundation refers to as “saying goodbye early” through a labor and delivery abortion. This option would allow us to hold her, take photographs, and keep her remains for cremation, providing us a brief window to create memories we would cherish forever.
Despite my instincts telling me she would have the disorder, I was shattered when we received the confirmation. I can hardly recall the details of that day, only the overwhelming grief as I repeatedly uttered, “She was so wanted. I wanted her so much.” I assumed having the procedure would be straightforward since abortion is legal in the United States. Initially, even my doctor believed we could proceed without issue. However, when we met with her a few days later, she informed us that due to the political climate, none of the local hospitals would allow the procedure. She referred us to a clinic in Atlanta that specializes in late-term abortions, four hours away. Although it wasn’t what we envisioned, I was desperate to prevent my child from suffering.
We made the appointment at the clinic, but learned we wouldn’t have the opportunity to hold her, take photos, or even keep her remains. The crushing reality hit me, but my commitment to protect her from pain overshadowed everything else. We were also told we would be separated from other women there for different reasons, and I would qualify for a one-day procedure.
As we drove to Atlanta, I felt like a fugitive, sneaking off to do something illicit. I feared judgment for making what I believed to be the best choice for my unborn daughter and our family, so only a handful of people knew our plans. No one should ever feel that way while making healthcare decisions for their loved ones.
Upon arrival at the clinic, we were not separated from the other women. My husband and I sat in the waiting room, surrounded by women seeking to end pregnancies for reasons unlike ours. I didn’t desire a perfect baby; I just wanted one that could live. Here I was, surrounded by women expecting healthy babies while my own was dying within me. If the laws in my state had been different, we could have avoided this ordeal and ended the pregnancy with our own doctor in a hospital setting—without encountering families who had what we wanted. Looking back, I realize those women were just as desperate as I was; their reasons for terminating may have differed, but their pain was equally valid.
We were called back three times, each time hoping for separation from the other women, only to be disappointed. During our wait, the only things keeping me grounded were my husband by my side and a book I had brought, Harry Potter and the Order of the Phoenix. Oddly enough, Dumbledore’s words about there being worse things than death resonated with me. After nearly four hours, we were told that a mistake in the paperwork meant we couldn’t proceed that day. If we wanted to go through with it, we’d have to return the following week. An ultrasound revealed Lily had minimal brain matter and that the amniotic fluid was even lower than before, further confirming our fears about her kidneys being non-functional.
Choosing to terminate the pregnancy was the hardest decision we ever made, as was finding the courage to travel to Atlanta. We were emotionally drained and decided to return home, allowing nature to take its course. Every day I carried her, I feared she had died, wondering if I was walking around with a lifeless baby inside me. Each morning brought anxiety—would today be the day she passed? I frantically called the doctor if I didn’t feel her move, desperate for reassurance. Each day was a torturous cycle of what-ifs and pain. What kind of life would she have if she survived birth? How would this impact my marriage? What about our five-year-old, who longed for a sister? I was overwhelmed, sleepless, and anxious, losing 12 pounds in less than two weeks, yet somehow managing to face each day for my daughter.
Lily was stillborn, and I found solace in knowing she would never experience suffering. I vowed to share our story, advocating for families facing similar situations to avoid the pain we endured. I’ve debated this topic online, spoken before legislators, and shared our story to challenge restrictive state laws. No shame should surround the deeply loving and selfless decisions parents must make regarding their sick children. If a born child is declared brain dead, parents can choose to turn off life support and let their child pass peacefully. If a terminal illness offers no hope, parents can opt to cease treatments. Why can’t we have the same options for our unborn baby? Is it simply because she had yet to be born?
While I passionately advocate for a woman’s right to choose, I equally support the right to carry to term. There is no universal solution for families grappling with difficult prenatal diagnoses. Every parent loves their child and wants what is best, and we should have the freedom to make those decisions.
For more insights on navigating family planning and reproductive choices, check out this excellent resource on treating infertility or explore options for home insemination at Make a Mom. If you’re interested in understanding the legal aspects surrounding these matters, visit our terms and conditions page for more information.
Summary:
In this heartfelt narrative, Clara Jennings shares her journey of love and loss surrounding the stillbirth of her daughter, Lily, who was diagnosed with Trisomy 18. The emotional turmoil of navigating healthcare options in a restrictive political climate led Clara to advocate for the right to choose, emphasizing the importance of allowing parents to make compassionate decisions for their children.