I Was Told My Baby Was 'Incompatible With Life'

The day I first heard the words "Trisomy 18" was the worst day of my life.

I was 18 weeks along in my pregnancy with our ninth baby. That phone call from the doctor turned our lives upside down.

To be honest, it had taken me a couple of months to get used to the idea that we were even having another little one. I had thought we were "finished" with eight!

But once again I had fallen in love with a tiny being growing inside of me. It seemed like such a contradiction to hear the doctor telling me she would probably be stillborn when I could feel such strong kicks and somersaults from within.

Yet there we were. Based on my blood tests, I had an elevated risk for this baby to have Trisomy 18. I didn't even know what that meant. I had never heard of this condition.

A few days later, sitting with a genetic counselor, I learned that Trisomy 18—also known as Edwards syndrome—means having an extra 18th chromosome.

Many people are familiar with the term Down syndrome, or Trisomy 21. The counselor taught us in layman's terms what this condition might mean and what they would be looking for in the diagnostic ultrasound that was to follow.

As we saw the "soft markers" on the ultrasound—clenched fists, clubbed feet, cysts on the brain—I felt waves of fear.

We chose to have an amniocentesis to confirm the diagnosis, feeling that knowledge was power. We wanted to know better what to expect; how to prepare.

What Kate Cox experienced is unfathomable for people who haven't received a devastating diagnosis for their unborn babies. For parents who hear that their baby is supposedly "incompatible with life," the sinking feeling of devastation is real.

Often, the only path doctors advise is abortion.

When Verity was diagnosed, I wanted to know how long she would live—if she would live at all. Once I connected with other families caring for children with Trisomy 18, I then needed to know what would happen if Verity was born alive.

What would our family dynamic look like? Would our marriage survive? Would medical bills bankrupt us? Would our child be "a drain on our family," as I was told by a neonatologist?

How could I have known at that time what our future would bring? In the moments of fear and questioning, all I could see was darkness and despair. And yet, as often happens in emotional circumstances, life moves on, and we begin to see with more clarity.

Little by little, we learned more about Trisomy 18–not in terms of suffering, but instead as exhibited by hundreds, maybe thousands, of babies, children, teens, even adults living with the condition.

My perspective shifted as I realized that maybe–just maybe–instead of preparing for our baby to die, I should be preparing for her to live.

And I'll be honest—that thought terrified me. How could I, a mother already overwhelmed by life with eight healthy children, possibly care for a child with profound needs? Yet because of our unwavering conviction that Verity was just as worthy of life and love as her brothers and sisters, I knew that whatever it took, we would figure it out.

Step by step, day by day, we did just that. I had no idea what kind of resources and support are available for families like ours, but now I know. No one has to do this alone.

Verity is now almost seven years old, living an amazing life with Trisomy 18. In many ways, she isn't like our other kids. I may never hear her say "Mama." She may never run, take ballet lessons, or play an instrument. She will always need assistance with the daily activities of life.

But this girl, this baby of mine, is worth just as much as any other human being on earth. Because of her innate dignity, abortion was never an option for us. It certainly would not have taken away anyone's suffering–hers or mine or my family's.

We live in a broken world. Everyone is going to suffer in this life. As the Man in Black observed: "Anyone who says otherwise is selling something."

Ending a child's life through a procedure that literally tears apart his or her tiny body does not solve anyone's problems. It does not lessen anyone's suffering. It only removes any possibility for joy and unexpected blessings.

I'm not a medical professional. Obviously, I do not know what Kate's doctors were telling her about her own health while pregnant. Previous C-sections can indeed increase risks to the mother's health.

Yet risks to a mother's life are very low in pregnancy while a late-term abortion is absolutely risky with undeniable physical, mental, and emotional effects. Termination will not remove grief.

After my own experience with Verity, I started a support ministry for families who receive any kind of a life-limiting diagnosis for their babies. I saw the incredible need for caring, compassionate support during a journey like no other.

Families need to see that despite the heartache of these situations, there is indeed hope. In 2023 alone, we welcomed 196 people into our online prenatal support group. Since 2020, when the ministry began, we have served hundreds of families all over the United States and, in fact, around the world. Kate was not–and is not–alone.

I wish I could have talked to Kate Cox. I would have cherished the opportunity to hear her story, answer her questions honestly, and offer hope in a time of great darkness. The resources we have found for families like ours and for babies with Trisomy 18 have been more than I ever imagined.

I don't know how long Verity will live. But I do know she is not in pain. She is not suffering. She is a joyful and happy child. She is not a "drain" on our family. She is our most precious blessing!

I know my children are the kindest, most compassionate siblings Verity could ever ask for. They adore their little sister. Verity has changed us all for the better.

True love puts others first. It requires self-sacrifice, not self-interest. True love invites us to serve others, especially the most marginalized and helpless in society. This is our calling, and yes, it sometimes involves hardship.

As much as we want to run from suffering, we cannot. For parents of children with Trisomy 18, our suffering unites us in love for our children.

I hope Kate finds peace. To live out her decision in the public eye is difficult. But I also hope parents who face similar situations won't see her choice as validation for a decision they may regret the rest of their lives. Every child is worthy of life and love.

Every day we have with Verity is a blessing. I thank God for her.

Beverly Jacobson is an author, speaker, homeschooling mother of nine, and founder of Verity's Village who resides in Colorado with her family.

All views expressed in this article are the author's own.

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