Why I told everyone on Facebook about my baby's birth defect

"Maybe it’s silly to take comfort in stats, but the 287 likes and 84 comments made me feel lighter."
Photo: Tallulah Fontaine

Photo: Tallulah Fontaine

After my daughter was born, I couldn’t wait to share the news on Facebook. Holding off for even 24 hours felt like restraint. Two years later, when my son arrived, the urge to shout my love from the rooftops was just as strong. But in my first post about him, I did something dishonest. I shared his photo and key stats, and a message of gratitude and joy, but I neglected to mention that Colin was born with a malformed left hand. I shared subsequent photos of him too, but only images that wouldn’t draw attention to this. It was both strategic and subconscious, and it felt like deception.

Minutes after Colin’s birth, the doctor pronounced him “perfect” and we started some skin-to-skin cuddles. An hour passed before we all realized his left hand was missing a finger and two others were fused together. What followed was a blur of tests and specialists, and an emotional roller coaster fuelled by postpartum hormones. We now know that one of Colin’s arm bones didn’t form properly in utero, a rare congenital abnormality. Some babies with the condition are born with no hand at all.

In those first weeks, I yo-yoed between new-parent euphoria, heartache, fear and disbelief. When my tears stopped, I’d look at my husband, see his sadness and start all over again. I couldn’t shake the feeling that I’d done something wrong during my pregnancy and that Colin’s hand was somehow my fault. I also felt guilty for grieving, because many parents deal with far worse. Did I even have the right to feel sad?

As time went on, not acknowledging Colin’s differences on Facebook felt like hiding. I regularly shared photos of him and his sister, Juliette. Should I crop out his hand or post pics without explanation? There is nothing wrong with keeping a family matter private, but for me, not sharing the whole story felt strangely secretive and shameful.

Three months after Colin’s birth, I posted a Facebook status update all about his hand.

“Long post alert. I want to share that baby Colin was born with some issues with his left hand. We have been meeting with specialists to determine the best course of action. His little hand should have good function, but it will never look ‘normal.’ This is a lot to take in. We are beyond grateful for our healthy baby and certainly have perspective (a day at a children’s hospital will give you that). But it is hard to learn that your son will face unforeseen hurdles. I’m sharing this because I plan to post photos of my little boy, because I am proud of him and because I am going through my own process of accepting and owning this reality—a reality that will not define Colin or our family, but one that bears acknowledgement. We will do everything we can to secure Colin the best care possible. Most importantly, he will be loved unconditionally. And, oh yeah, here he is looking really, really cute.”

I underestimated how cathartic this would be. Maybe it’s silly to take comfort in stats, but the 287 likes and 84 comments made me feel lighter. I heard from friends, family, former colleagues, classmates and people I hadn’t spoken to in years. I was moved by their kindness and words of solidarity, but most touching was their confidence in our ability to shape Colin’s outlook. His hand won’t hold him back.

Colin is 10 months old now, and his arm is developing well, but he doesn’t have enough space between his thumb and pointer, and the finger that is fused to his middle one isn’t developing properly, which could impact his hand function. Surgery will correct some of the spacing, but we have a difficult decision to make: separate the fused digits at the risk of compromising function and requiring future surgeries, or pre-emptively remove the finger, which feels like giving up. My instinct as a mother is to fight for that finger, but if doctors feel it’s causing more harm than good, I’ll have to let it go.

Colin will probably favour his right hand for sports and writing. Playing piano or guitar could be tough, but not impossible. He’ll just have to work a little harder. Kids have an incredible ability to adapt. No matter how many tries it takes him to grab a toy with his left hand, he doesn’t switch to use his right. He keeps trying with the left.

I still hate that Colin will have struggles, and sometimes I cry because he doesn’t know what he is in for. He is the most easygoing and smiley baby, which almost makes it harder, because I worry he’ll lose his happy-go-lucky nature.

At the grocery store recently, a stranger came over to admire Colin. She took in my son’s adorable face, his little hand and me, his mother, ready to do anything he needs. She looked me in the eyes, smiled, and said, “He is perfect.”

A version of this article appeared in our September 2016 issue with the headline, “Picture-Perfect,” p. 36.

Read more:
Why my baby won’t be on social media
Do you put your kid on social media?
Sharenting: Is it OK to write our kids’ stories?

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