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Insane In The Membrane: The Craniosynostosis Story

What was supposed to be a visit to a new specialist for some unusual test results, turned into us getting asked if we liked the way Mark looked. I never thought I would be asked “Do you like the way your son looks?” That was such a strange thing to ask someone. Not to mention the awkwardness of having to answer it.

Mark’s appearance has already changed so much in his very short life. At birth, his skin was practically see through. Each leg was as big around as a pencil. For the longest time, his eyes were grey. I swore they would turn blue. Travis’ strong genes won that trait. Last summer his hair turned blonde, bleach blonde, just from being in the sun every chance he could. His dimples showed up out of nowhere one day. His chubby baby look faded and this big toddler boy look took over. It was incredible.

This small, tiny baby face that I’ve studied every single inch of, fell in love with, turned into such a big boy face. Smudges of chocolate on his lips and specks of dirt on his cheek sit where drool and milk used to. It’s amazing that someone can change so quickly in such little time.

Then I am asked if I like the way he looks.

Mark was referred to Neurosurgery for abnormal results on his MRI. In addition to his other medical history, Mark has extra ribs and an extra vertebra. The appointment overall was normal. The doctor and ARNP were not concerned with their findings and began to wrap up the appointment, that is until Mark bent over just slightly. She noticed his head shape and she asked if we liked the way he looked.

I said, “well of course we do.” She asked to get some photos of his head from different angles and explained what exactly had her concerned, what caught her eye. She looked at me and said she isn’t quite sure. She said she would need to speak with a doctor that specializes in this type of surgery because it like Craniosynostosis.

A day later, we received the phone call- the doctor was pretty convinced it was moderate Craniosynostosis. They ordered a CT and it was confirmed- Mark had Metopic Craniosynostosis. Metopic Craniosynostosis is the premature closure of the metopic suture (the suture on your forehead that runs from the top of your forehead to the bottom of your forehead) that causes trigonocephaly – a triangle-shaped head.

When you are born, your skull isn’t fused together yet. Like tectonic plates, they shift, experience pressure, growth, and collide with one another to fuse (instead of making mountains). In Mark’s case, the “plates” on his forehead fused together before they should have, causing an almost point on his head.

There are many side effects that can be caused by this condition. About 20% of children who do not proceed with the surgery experience life altering symptoms. Since Mark’s skull fused together prematurely, the brain would have no room to continue its growth, the brain could begin to hemorrhage as pressure builds up. The pressure could cause excruciating chronic migraines as well as permanent damage to his vision.

20% seemed like too high of a chance for us to risk not having the surgery done. If we had learned anything throughout our journey together- its that if there is a small chance of anything bad happening to us, it is likely going to happen or has already happened. We couldn’t risk it. We weighed the pros and the cons. We stayed up all night going back and forth on it. This decision was one of the most important decisions I’ve ever made, and one of the most difficult.

Surgery for any child is almost always major, but this wasn’t a broken arm being repaired. This wasn’t a knee being adjusted. This was his skull. This is what houses his brain, everything that makes him… him. One small knick can injure a meninge, the final line of defense for the brain. This was Mark’s skull being cut into pieces and placed back together carefully, piece by piece, held with only pins and plates. This was my 27-week preemie with scarred lungs on a ventilator for 6 and a half hours. This was a decision, that if I chose wrong, could haunt me for the rest of my life.

I kept fighting with myself. “Mark is young enough to do the surgery without really remembering it. We’ve been in the ‘only 20%’ or ‘less than 2%’ etc. before.” I would tell myself. I would have to remind myself of his strength, his resilience. Babies, toddlers even, are so incredible, really. We think they are tiny, fragile, and helpless, but they are forces of nature.

After many sleepless night, hours of research, and asking as many questions as possible, we decided to go for it. We scheduled the surgery. On November 12th, 2020, my son had surgery on his skull to protect his brain.

The surgery itself took a little longer than expected. During the procedure, Mark lost a lot of blood and required a few blood transfusions, specifically platelets, to help him along the way. The two lead surgeons from their respective specialties came out to inform us the surgery was a success. One doctor said everything came apart nicely and the other said he put it back together even better than how he found it. The team was closing up and pulling him off the vent(illator) and we could see him soon.

We were told someone would call us when they moved Mark up to his room in the PICU. One hour after the doctors came out, no call. Two hours had gone by. We had been there since 6:00am and it was 4:30pm, no one had called us. Even the surgery clerical staff had gone home for the day. I looked through my surgical packet and I found the number to call back and get information about where my son was and why we weren’t called. It was just as I feared., Mark was having trouble coming off of the ventilator. His lungs were struggling and even had to endure manual compressions until he could be reintubated.

No one really knows how close we’ve been to losing Mark in the NICU. They don’t know how many times we’ve come that close in the NICU. I thought those days were behind us, but this time was too close to call.

We met Mark in the PICU and he was sleeping peacefully. He had his bandaged wrapped around his head, the nostril blocker (it’s what I call it anyhow) to keep his nasal cavity open, and his little IV in his hand. He also had his drain pump coming out from his head dressing, already filled with blood.

It took everything in me NOT to pick him up right then and there. It took every ounce of strength for me not to want to touch him, hold him and just sing to him. His little eyes would flutter open for just moments at a time before he’d drift back into a foggy sleep from the anesthesia. He grabbed my hand and held it to him. He kept reaching over his shoulder looking for Travis. He knows where his dad likes to cuddle up next to him. He kept asking for Mama and Daddy. He was in pain. He was scared. He wasn’t feeling right and he wanted us. He wanted me and my heart broke a little more because I knew the next few days were going to be tough on him.

Since COVID-19 has swept across our borders and into our communities, the local hospitals have been in an almost lock down. Only one parent or guardian is allowed to stay overnight with pediatric patients. This means I lived in the hospital again for a few days with Mark as he recovered.

I remembered the uncomfortable couch, but I came prepared. I brought the tablet to keep Mark entertained and contained in his hospital crib. I was sure to bring his pillow and blankets from home, with his security blanket and stuffed animal or two. I brought my pillows and blankets, slippers, and our suitcases too. We were ready.

Remember that thing about faces changing? Mark’s face changed even more over those 4 days than it had in his entire life. He looked so peaceful asleep after surgery, but by early morning, one eye had completely swollen shut and the other one was not very far behind at all.

He wouldn’t eat much else other than applesauce. The anesthesia seemed to mess with his stomach and he would vomit it up shortly after eating. He stopped drinking milk and even toddler formula. As a former micro preemie with an uphill battle to gain weight, these were all horrible signs. He did lose almost 2 pounds while in the hospital. Lack of food and consistent vomiting were detrimental to our Nutrition and GI journey.

He had to teach his muscles to walk again. A toddler bed bound for 3 days will often struggle with coordination. We had meetings with Physical Therapy to walk around the observation unit. Eventually Mark’s walking turned into “walking with purpose” or “fast walking.”

Soon, we went home with a little boy who looked nothing to what he looked like when he came in. His head was shaved. He had an incision and stitches from ear to ear. His eyes were puffy and swollen, and he was so incredibly sleepy.

But he was still that little 1 pound 7 ounce baby in the incubator holding onto my finger the first time I saw him. He was still that little brown-eyed boy who lit up when you read him a story. He was flashing his biggest and brightest smile, showing off his dimples. His blonde hair, now brown and short, would soon cover a scar that shows his strength to over adversity. The chubby little face had thinned out and his head was a different shape and swollen.

If you were to ask me if I liked the way my son looks… you should know, I’ve looked at his face a million times and there is nothing I would change about him.

Unless the doctor’s say it’s beneficial to his health and quality of life.