By Erin Clark Frost
Some things, we don’t talk about. We don’t talk about them because they hurt, or because social stigma tells us to keep them bottled up. I want to suggest that stigma can be overcome, and that hurting is okay. Talking about hurt, being vulnerable, can lead to healing.
Two years ago, in July 2017, I was happily pregnant with a baby that my husband Andy and I had been waiting on for many years. A month later, we went in for an anatomy scan. We’d had several scans already as a result of doing IVF. They made us nervous every time because we’d found out that our first baby had died in 2013 during an ultrasound scan. I crossed my fingers, telling myself lightning doesn’t strike twice.
In August 2017, we learned about several abnormalities on our scan. We went home, did research, steeled ourselves for the possible diagnoses, and named our baby Caroline Rosie. Caroline, for my grandma, who loved babies. And Rosie, because our girl always had her fist clenched like Rosie the Riveter. Andy said she was strong.
After a couple of excruciating weeks of waiting, blood tests, and an amniocentesis, we learned that Caroline had Edward’s Syndrome, also known as Trisomy 18. T18 is a condition that is often considered “incompatible with life.” Many parents and advocates have fought against this label, and some children with T18 have lived beyond their twenties. Medical professionals are less and less likely these days to deny treatment to children with T18, which has had the result of increasing their overall life expectancy. Still, 90% of T18 babies die in utero and fewer than half of those born alive survive their first month.
I chose to carry Caroline as far as I could. This was a personal decision, the best decision for Caroline and our family. We shared Caroline’s diagnosis with a few people, but we didn’t go public because we wanted people to love Caroline for her sweet self and not see her only as her diagnosis.
Andy was right that Caroline was strong—she fought right up to 34 weeks. She came into the world on her dad’s birthday and started to breathe in response to our voices. She was perfect and beautiful. We got to hold her for several hours, and that short time with our daughter was worth everything.
The most wonderful thing happened as we grieved: We learned how very kind people are. A fellow T18 mother—someone we’d never even met before—came to the hospital to sit with us. Our doctors and nurses continued to check on us. My friends from the Daughters of the American Revolution set up a meal train. Folks I’d only met only through the Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) and the Trisomy 18 Foundation lit candles for Caroline and sent messages of support via social media. My colleagues from East Carolina University checked in regularly. Friends from home in Illinois and Missouri visited, called, and sent cards and care packages. We were surrounded by love. Some people couldn’t cope or fell away, and that’s all right. Because mostly, we felt love—and we know that’s what Caroline felt, too, while she was here.
So, I’m wishing my sweet Caroline a happy 19 months today by telling you about her and by encouraging you to talk about those parts of life that hurt—because the parts that hurt are important.