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.
