Craniosynostosis Awareness & Acceptance Month & Why It Matters to Me

“Do you see it?”

My husband was the first to really notice around our daughter’s 9 month-day.

I immediately began to feel defensive. Afterall, I’m their primary caregiver & the one who gave them life. If anyone should notice a problem, it should’ve been me, their mom.

But I didn’t, or didn’t want to, and it took me a few weeks before I finally saw what he saw.

Our daughter’s head was sloping in around her ear & bulging out on the right side.

I remember the exact day because we were going to the rodeo & she was dressed in her little cowgirl outfit & she looked so cute, but I couldn’t not see the shape of her head, and I hated myself for it. I was overcome with guilt, fear, & grief.

A trip to her pediatrician for her 9 month check-up left my heart in knots, my stomach in my throat, & me sobbing the whole way home. Finding out there is something wrong with your kid and not knowing how bad it is, well, it’s a special level of hell.

We were initially referred to a Pediatric Neurosurgeon. I was terrified.

The best news came when our Pediatrician switched our referral to a Craniofacial Surgeon instead.

For specialty doctors it can take awhile to get in, but within about a week, we were having our first meeting.

Our Craniofacial doc is a very kind person. She didn’t want us to worry, but she could definitely see the bulging. She also couldn’t feel any of the normal sutures as being closed, which made this rare & intrigued her. All I have to say, is you don’t want wants going on with your kid to be rare and you definitely don’t want it to peek your specialty docotor’s interest. In any case, she was stumped, so next came a CT Scan.

Keeping a young child fasting is a nightmare, especially breastfeeding babies because not only are you denying them food, you’re denying them a source of comfort.

And while our appointment should’ve been textbook easy, it wasn’t. Our scan got pushed back by hours & by the time our daughter got the twilight medicine we were all emotionally distraught.

When it was over, we were left to wait to be called back in to talk about their findings.

What they found was two of her sutures on the left side had fused too early, but not the typical ones you’d normal see in a craniosynostosis diagnosis. It was rare, and weird, which was worrisome.

We talked options.

Surgery, which would leave massive amounts of scar tissue and would be mainly for cosmetic purposes was not recommended.

A helmet? We were too late in her growth for a helmet to be of any use. Early detection is no joke.

So, we left it in a “watch & wait” kind of place until we would be called back some months later for a panel with a bunch of pediatric specialists.

I hate waiting, but even as (wonderfully enough) our daughter continued developing typically, and even excelling past milestones, we still worried.

Like, the doctor had suggested to us, as she grew and more hair came in, the shape of her head became less and less noticeable.

By the time they brought us in for the panel, they were even surprised by how well her head looked. I cannot tell you how thrilled this makes us.

We will continue being seen by her Craniofacial doctor because our daughter does have Craniosynostosis, but we have been so lucky to have it be this mild & not requiring invasive treatments. So many families are not lucky like we were. Their children have to undergo MAJOR surgery. My heart breaks for them because I remember how scared I was when I thought we might have to do something like this.

So, since the month of September is Craniosynostosis Awareness & Acceptance Month, I wanted to share our story finally. I hadn’t shared our journey because I didn’t want people to change the way they looked at or responded to our daughter. This is unnecessary. She is funny, smart, kind, beautiful, & completely perfect just as she is.

Our story has a happy ending. I’d like to believe most of them do, but as so many of us know too well, the world can be a cruel place to those who are different. Let’s try to change this together.

For more info, read this piece on the HuffPo about Craniosynostosis.

And turn your FB yellow with the Children’s Craniofacial Association!

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