A Mother’s Story of Loss, Love and Life With a Special Needs Baby
October 24, 2017
Three c-sections and three babies later, I still remember everything about my first loss. I was 17 weeks pregnant when the nurse called to tell me our baby might be showing signs of trisomy 13 or trisomy 18, two types of chromosomal disorders. While an amniocentesis didn’t confirm any complications, Francisco was born with bleeding in his brain. He died a day later.
The experience made me realize that no matter the risk of complications, I wanted to spend less time worrying during any future pregnancies and instead focus my energy on creating a happy home for my child. So when my third baby was given a 96 percent chance of Down syndrome 10 weeks into my pregnancy, I was prepared to have the baby many people choose not to.
It’s not that the diagnosis was easy to process. I had assumed that after everything we went through with Francisco, lightning wouldn’t strike twice. In fact, my husband and I had welcomed a healthy baby girl, Marinna, 15 months after our loss. But things were a little different with baby no. 3. Because of my advanced maternal age (I would turn 35 just before the baby’s birth), my doctor suggested I try a new non-invasive prenatal screening test called MaterniT21. On the way home from one of my daughter’s playdates, I got a phone call. I needed to call the doctors back about my test results.
The screening test predicted our baby, a girl, had Down syndrome. Knowing it would be easier for me to grieve this diagnosis before our baby arrived, I opted for an amniocentesis, which confirmed the test’s results. I wanted to separate the experience of learning our daughter, Halle, had Down syndrome from the experience of her birth—and I feel blessed that I was able to do so.
I felt so hopeful for Halle’s health, but I also felt so afraid of her future. The complications of life were going to be many for her; how would she do with challenges? How would we do? I felt sad for the life Halle wouldn’t have and apprehensive about the life that would be hers.
As we prepared for her arrival, we shared the news carefully. It was so difficult to decide who to tell and what to say—I didn’t want any pity. My husband wrote a fantastic email to our family, announcing the pregnancy while explaining our views about warmly welcoming an extra-special addition. After sharing the news with friends, we were introduced to a local family who had a daughter with Down syndrome. They invited us over and introduced us to a whole group of families who have a child with Down syndrome. I received lovely emails from moms sharing their stories, and it was a relief to be facing this feeling a little less alone.
Our daughter Halle arrived via scheduled c-section—my third baby in 32 months. While we were aware of all the challenges a child born with Down syndrome may face, we still felt unprepared for some of the scary possibilities. Would her communication be different from other babies? Could she communicate if she was hungry or tired? I worried she’d never learn to self-soothe. But Halle surpassed so many of our expectations. Her very first victory? She was able to exclusively breastfeed.
Halle is about to turn 4. I’m fairly biased, but I think this girl has the greatest personality ever. She attends school for six hours a day, and the dedication, pride and devotion she displays is amazing. The other day, she walked right up to three high school boys at a friend’s house and individually shook each of their hands. Halle for mayor!
If I had known Halle as she is now, I would have been beyond excited—not nervous—during pregnancy. When we were told her life would be different, we were filled with fear and sadness. Yes, her life is different. And so is mine. And you know what? Our lives are lovely! Of course, we encounter our fair share of hurdles to overcome. Just when you think you have it all together, you find yourself facing the unexpected. But in that respect, we’re not so different from any other family.
Since Halle’s Down syndrome diagnosis, we’ve faced plenty of other challenges. When she turned one, I suffered a cardiac arrest. I lost another baby. We’ve welcomed another baby. Life is so crazy and random, but I continue to live in the moment, however that applies.
As a personal assistant to three kids age 5, 4 and 1, Caroline spends her time trying to keep up with the wonders of suburban momhood. An avid dog rescuer, she also has two rescue dogs and many daily visitors.
Published October 2017