The Hardest and Easiest Decision

Apr 20, 2017 | Hypoplastic Left Heart Syndrome, Stories, Trisomy 18 (Edward's syndrome)

I felt that if I carried her to term it would be for my benefit, not hers.

By Ava’s Mom

Today my mom called me about my cousin and his wife who are expecting their first baby. We are very happy for them. Their baby is breech, so they’ve  scheduled a c-section which will take place on my second child’s due date. It hit me that I should be planning a first birthday party. It also hit me that for my cousin’s wife, the worst thing happening is she can’t have the vaginal birth she wanted. I have had three children vaginally, but only two are living.

My first pregnancy—a chemical pregnancy—ended before it really began.  I didn’t think of it as much more than a disappointment. My doctor said it was like a slightly late period.  My second pregnancy was very easy and resulted in a healthy baby boy.  But my third pregnancy was not so easy and didn’t result in a take-home baby.

We wanted two children close in age. I was almost 37 when my son was born, and I have a BRCA-1 mutation which increases my risk of ovarian and breast cancer. I would be getting them removed when I was done having children.  We found out about the mutation after my younger sister was diagnosed with breast cancer at 33. She died only 6 months after her diagnosis.

After my son arrived, I opted for no birth control. Since I was breastfeeding, my period didn’t return for almost 8 months.  I had one period and then nothing the following month. I thought nothing of it, figuring it would take a while before my regular cycles returned.  But when I started hating coffee, I knew something was up.

Sure enough, the pregnancy test was positive.  I was surprised it happened so quickly; it had taken months of timed intercourse to get pregnant with my son. Yet there I was staring at a positive test.  This pregnancy was a bit different. I felt more tired and nauseated. I assumed it was because I’d already had a child or perhaps (and this is what I felt) it was a girl this time.

We headed off for the NT scan and first round of blood work, happy to be able to see the baby for the first time. There was a nice, strong heartbeat.  The tech took some quick measurements and determined I was only 11 weeks pregnant, not 12 based on my last period. I was instructed to return the following week.

The next ultrasound went quickly, but the tech got all the measurements she needed and everything looked good.  I went back a month later for the second round of blood work, and then a few days later I got the dreaded phone call: Your baby is at increased risk of some type of abnormality.

I still didn’t really worry. After all, you hear about the false positives for screening tests all the time. I was older, so that increased our risk.  But then the genetic counselor said our baby had a greater than 1:2 odds of having Trisomy 18.  We were devastated. Those were horrible odds.

We were given the choice of the cell-free blood test or an amnio.  I chose to start with the blood test as it’s less invasive and wouldn’t require us to tell anyone. If I had the amnio done we’d need to have someone watch our son.  The cell-free test came back positive and we scheduled the amnio to be sure. But we really didn’t need those results as the ultrasound showed many abnormalities; including cysts in her brain, clenched hands, and more serious things like a possible hypoplastic left heart syndrome and/or diaphragmatic hernia.

The FISH results came in three days later, but we already knew and had decided we would terminate the pregnancy.  I felt that if I carried her to term it would be for my benefit, not hers. In many ways, it was a relief that the ultrasound showed so many abnormalities—any one of which would be hard for an otherwise healthy baby to survive, let alone a baby with her list of abnormalities.  So we made the hardest—but in some ways the easiest—decision I have ever made. At 23 weeks pregnant, we said goodbye to Ava.

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