Luke's Story - Part 1
“We’re sorry. Down Syndrome. Heart Defect. CVS. Amnio. Termination. Termination. Termination.”
Those are the only words I remember being spoken at our 12-week genetic ultrasound, and they ring through my mind incessantly every time I think of that day. In June of 2019, when I was newly pregnant with our second child, my husband and I excitedly went to the doctor’s office impatiently waiting to see our baby on the ultrasound, to hear the heartbeat, and to walk out knowing our baby was healthy and strong.
I knew something was wrong before the scan was done. I could see it on the ultrasound tech’s face. She kindly wrapped up our ultrasound appointment and brought us out of the room, but asked us to have a seat in the waiting area so she could talk to the doctor. Immediately I was filled with dread, and I looked at my husband as we were brought back into the ultrasound room once again and said “something isn’t right, we didn’t do this last time.”
A maternal fetal medicine doctor introduced himself to us and after that I only remember fear, sadness, and worry. There was no “congratulations on your baby”, it was just phrases like “extra fluid in the nuchal fold”, “could be a heart defect or Down Syndrome”, “you have to choose a CVS right now or an amniocentesis later”, “we have resources for termination”, “if you decide to terminate we can help with that”. I’ve never felt so numb in my life.
My husband and I took a few minutes to pull ourselves together, staring at the sweet pictures of our baby that the ultrasound tech had given us just minutes before. I felt broken and crushed. We agreed that we both felt too pressured to make a decision about invasive testing right in that moment. So instead we opted for noninvasive prenatal testing, which is a bloodwork sample better known as NIPT; knowing that it wouldn’t give us any guarantees. Then we went home, and we waited, and we cried, and we prayed.
A week later another MFM doctor called me to tell me the results of the bloodwork, over the phone, not even asking if my husband was with me or if I had support – “It’s positive for high risk of Trisomy 21, do you have any questions?”. My mind racing, I tried to get some of the questions out as I was processing what she had just said. Asking things like what this meant for how we needed to prepare for our baby’s birth, could she tell anything about severity from the testing we’d done, and was our baby otherwise okay. Again, I was met with negativity and information that caused so much more fear, anxiety, and dread to build up. Her response was that, while Down Syndrome is no longer a “death sentence”, our child would have minimal intelligence with an IQ that would never be above 50, our child would always live with us and need our help or have to be taken care of by others, our child would never be financially independent and would likely never have a job - but maybe one day could work at Publix. She ended the conversation by twice offering resources for terminating my pregnancy and told me to have a good day.