The day I learned our baby had Down Syndrome

After I learned from the initial mosaic result of our CVS that our baby “most likely” had Down Syndrome, everything changed. I no longer felt any hope for the pregnancy. All I felt was anxiety, fear, sadness and numbness. I refused to let myself consider the possibility of termination until I knew whether Down Syndrome was a certainty, but at the same time I placed all the feelings of love and excitement for our baby on hold. I was protecting myself and I felt ashamed in doing so.

I spoke to a geneticist at the hospital. I thought I might perhaps learn something from  her, but I didn’t really. She discussed my options at this stage. We would have to wait until 16 weeks for an amniocentesis, with the results likely to come out later that week. We could keep the baby, we could terminate. No pressure was placed on me to choose one way or another. If ultimately we choose termination though, I would likely need to be induced over several days, as surgical termination is rare after 12 weeks and not possible at all after 18 weeks.

This really threw me. I was sick at the thought of an induction. I briefly let my mind wander. I would need to take pills and then wait, overnight, a morning, perhaps an afternoon or even two nights for contractions and labour only to give birth to a baby that was no longer alive. There was no taking this baby home in the capsule and wrapping him or her up and rocking him or her to sleep. Jesus. I couldn’t bear the thought and I cried. I thought of all the woman who must have been through this process, whether by choice or otherwise, whether now or later in their pregnancies. It was heartbreaking.

I was so anxious when I returned home that I rang BEP. “You never mentioned that if we elected to end the pregnancy it would be by induction!” He replied that it was because I’d never suggested to him that we wanted to terminate. Still! He explained that surgery would most likely be possible, provided we were within the 18 week timeframe and one of the two surgeons available wasn’t on holiday. On holiday. Imagine having your path chosen for you because the surgeon is on holiday. I irrationally thought that surgeons shouldn’t have holidays.

I went to work on Monday. But 9am I completely broke down. I sobbed at my open plan desk, in front of my colleagues, our marketing manger, our librarians. My PA shuffled me into my boss’s office. Thankfully he was overseas and I was able to hide in there, blotchy red face and streaming eyes. I asked to talk to HR. Our HR lady came in. I explained everything. The first miscarriage. The second miscarriage. The possibility of things never returning to normal. The 12 week scan. The CVS. The real likelihood that we faced having a baby with Down Syndrome. She said something about one of her friends having a miscarriage. At the moment I realised she had no idea about the pain I was in. I went home.

I was coming home from the supermarket on Friday, just over a week since the initial CVS results came through. The geneticist rang. She said some lab test results had come back. I was mystified. As far as I knew the next step in our process was the amniocentesis at 16 weeks. We were at 14 weeks. “The final results from the CVS have come back. It usually takes much longer which is why the next step we considered was the amnio. The chromosomes are 100% Trisomy 21”, she said. I didn’t cry. I wasn’t shocked. Bizarrely I felt only relief tainted with sadness. It was game over. The worst two week wait ever was over.

 

 

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