When My Son With Craniosynostosis Showed Me the Resiliency of Children


My son was born with metopic craniosynostosis.

There was a time I couldn’t even spell that word — until it became a huge part of our lives.

This means his forehead was prematurely fused together when he was born, and if he didn’t undergo complete craniofacial reconstruction, he could face a myriad of problems, not limited to vision impairment, learning disabilities and developmental delays.

We found out about his craniosynostosis when he was a few weeks old. We met with neurosurgeons and plastic surgeons, neurologists and geneticists. We spent countless hours at appointments.

We learned a little more about the surgery than we wanted to know. They were going to remove our son’s skull, break it and put it back together with dissolving plates and screws.

When they showed us a model of a skull and started taking pieces off of it to explain the surgery, I felt sick. I couldn’t listen to the doctor anymore. I couldn’t look at my husband. I wanted to take my itty-bitty boy and run as far away as I could. I wanted to shelter him from this.

But I didn’t. I knew it was best for him. I knew he was a fighter.

So, at 4 months old, we handed our 10-pound baby over to a nurse and waited for four hours while the doctors worked their magic. I was scared. There aren’t words to describe how I was feeling. I prayed and prayed and prayed some more. The hours dragged on as we waited.

But then they called us back. The doctors were shaking hands and patting each other on the back. And smiling. And I knew it was OK. He did great. Perfect surgery. No complications.

So, we went to meet our little guy. They took us into the post-operation room, a room lined with other sick children. We couldn’t even find him at first. The pain of not recognizing your child is one I hope no one has to experience. But then, we saw him. His head was a completely different shape, but he was still our tiny little boy.

The four-day recovery in the hospital was rough, but the nurses at Peyton Manning Children’s Hospital were amazing, and our little guy was stronger than his parents. The swelling scared us, but our little man was still smiling. The days passed quickly, and we were ready to go home.

Looking back, it seems like a lifetime ago. We were different people then. We tend to forget what it was like to have a sick baby, looking at the rambunctious and active toddler before us.

If you or anyone close to you is going through this, I hope you take comfort in our story. In all of this, we learned the resiliency of children. It took us parents longer to get over everything than it took our son. It is beyond amazing what his little body can do, and he just keeps going. He recovered so quickly and bounced back to normal after a few days. The swelling took a while to recede, but it’s amazing to see my son grow.

There are all sorts of support groups online and so many craniosynostosis parents willing to offer words of advice and reassurance (and not just for craniosynostosis — for a wide array of disabilities and conditions). Join them and listen to their stories. I found great consolation through the words of people who shared what they had been through. And now that we’re on the other side, it’s so nice to offer some relief to my fellow parents of sick children.

baby with bandage on head in hospital
Stephanie’s son.

Follow this journey at Mrs. Bishop.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.


Related to Craniosynostosis

Mom Responds to Bullies Who Made Cruel Meme of Son With Rare Disorder

AliceAnn Meyer documents the ups and downs of special needs parenting on her blog, “Jameson’s Journey,” and she recently discovered internet bullies used a photo of her son and made a cruel meme mocking his appearance. “What compels a person to do such a thing I will never understand,” she wrote on her blog. “There [...]

This Is What It Means To Be a Cranio Dad

Dear Craniosynostosis, When I first met you, I hated you with every fiber of my being. I felt that you took something away from me. In your own special way, you extracted every ounce of fear and inadequacy out of me and brought it forward for the world to see. In an instant that seemed [...]

19 Things Only Special Moms Understand

A group of strong, intelligent, courageous, loving, special needs mamas wrote these 19 things that only a special mom would understand. One of their most important qualities is that they have a sense of humor… something that is a requirement for sanity for the special needs parent. 1. If you’re standing in line at Target and [...]

Why I Created a Comic Book Featuring a Superhero With Down Syndrome

Comic books need me. That sounds terribly presumptuous, doesn’t it? Before you judge, hear me out. Almost five years ago, I was little more than a fan of comics. Sure, I’d been writing reviews, doing the occasional interview here and there. Writing comics? If you asked me about that then, my right eyebrow would have [...]