Myles

My journey as a Cranio Mom began in the Plastics office at Children’s Hospital in Boston, MA. I thought that my seven-month-old son had a funny shaped head. One eye was higher than the other. A part of his head was flat in the front. From above he looked misshapen. My pediatrician told me he would “grow into it” and not to worry. Mother’s intuition told me otherwise. I thought I was heading into Boston to get fitted for a helmet. I joked about all the cool things I would do to it (as I am an avid crafter)…decoupage, stickers, airbrushing…

Boy, was I shocked.

The doctor knew right away, within a minute of walking through the door and laying eyes on my sweet boy. He spoke to me very kindly and explained the surgery and all I remember is staring at him, hearing only snippets of what he was saying. “Suture…coronal…cranio-something-or-ther…surgery…hospital stay…skull reconstruction…” I grasped about 50% of the conversation. I itched to take out my iPhone and Google the crap out of this new word I learned that would define our “case” at the hospital for the next few months. Myles had left coronal craniosynostosis. According to the doctor, the asymmetry was fairly severe.

On the drive home, I couldn’t even wait until I got over the NH border to call my husband and cry. (I had told him not to bother coming to the appointment with me-I was so sure it would just be a simple measuring for a helmet)

We set a surgery date two months to the day out from the day of his diagnosis. Myles was subjected to lots of appointments with various doctors and tests. Blood draws, geneticist, ophthalmologist, sedated CT scan. Through all of this, people kept telling me how brave I was. If they only knew how much I cried. How much I researched. How I resented kids with normal skulls. I wasn’t brave-I was pissed…and scared.

A few days prior to the appointment, we went down to CHB for our pre-op appointment. More blood work. Myles’ big brother came down with strep…I was so nervous they would reschedule us. They didn’t. My mom took care of my house and the dogs and made sure my then-6-year-old daughter and 5-year-old son had meals and rides and baths and hugs. I made lists, I packed, I re-packed, and made some more lists.

A wonderful friend set us up with www.takethemameal.com and lots of our local friends made meals to take care of us. It was so touching. I will never forget the kindness of those gestures. I hope to repay all of them some day.

Surgery Evening…I can’t even describe the anxiety. Myles was his usual self-snuggly, cheerful, and inquisitive. At nine months old, he was still waking to nurse at night. Since he had to fast, I had him sleep next to my husband and I dressed in layers so he wouldn’t ask for milk. At 5 am on November 8, 2011, my husband and I packed up and checked out of the hotel and made the short walk to the hospital. It was dark and eerily quiet. The usually-bustling lobby was almost deserted and it made the pit in my belly that much worse. Myles babbled and chomped on his pacifier and smiled with his crooked eyes. He had no idea what was to come.

We checked into the pre-op center and waited, and waited, and waited. CHB takes the babies first for surgeries so barring any emergencies, we were ready to go. After we changed him into a johnny and oversized hospital socks, we waited some more. I was beside myself. So many people came and introduced themselves to us…the pre-op nurse, an intern, the anesthesiologist, her nurse, the liaison, and finally the surgeon himself. I kept my cool and answered questions, made stupid jokes, and laughed this whole crazy scene off. When it came time to hand Myles over, I lost it. I wrapped my arms around him and desperately thought of alternatives we could try to avoid the surgery. I thought of my baby boy’s head being sliced open. I thought about the 4-5 hour wait in the waiting room. I wanted to throw up. He was fine until he saw me lose it. Then he lost it and I don’t remember what happened next, only that I was in the waiting area talking to the liaisons and figuring out the hospital breast pump and donning my care package socks…big, fuzzy, purple striped socks. I thought of Summer and Shelby and the wonderful package I received and all the other moms who had been in this exact moment with the exact feelings. I felt better immediately.

After a 5 day hospital stay and some follow up appointments, Myles is doing wonderfully. He is 6 months post-op and looks great. He has some lumps and bumps that should smooth out over time. If they don’t, we can always do a revision surgery. Not nearly as invasive as what he’s already been through I’m sure we can all handle.