“After I gave birth, I thought my family and I would be basking in the glory of bringing home our 6 lb 13-ounce beautiful baby boy. We didn’t know we would soon be facing a dark reality.
‘Your son has craniosynostosis,’ said the doctor. ‘He will be facing multiple surgeries to the skull.’ Those words still ring in my head like a nightmare I cannot escape from.
Conor’s diagnosis was so much to take in. We had never heard of craniosynostosis before. We learned that it is the premature fusion of an infant’s skulls that leaves no room for the brain to grow. Without surgical intervention, it would cause increased pressure on the brain, cognitive delays, vision loss, seizures and a whole host of other issues. We also learned that it only occurs in 1 out of every 2,500-5,000 births.
We first met with Conor’s team at the Children’s hospital of Pittsburgh in February of 2018. Our first meeting was at the Cleft craniofacial center and with neurosurgery to discuss his surgical options. Once we sat down, it was all a blur after that. All I could think was, ‘What did I do wrong during my pregnancy to cause this sweet blonde-haired, blue-eyed boy to suffer like this?’ I had kept him safe and growing for 9 months but now everything was out of my hands. It was the most horrific feeling I have ever faced.
His first surgery was on April 4th where they removed the fused portion of his skull and placed in large metal springs to help his skull slowly expand over a four-month period. As soon as those four months were up, he went in for a removal of the springs. We thought the surgical journey would be over… or so we thought.
The night before surgery was a sleepless one. If I could compile a list of every bad day in my 30 years of life, none of it would even come close to what we were feeling that night. Conor woke up so smiley that morning, his chubby cheeks snuggled up to my chest not knowing what hell he was about to endure. The entire drive to the hospital my husband and I were silent. We just couldn’t process what was happening.
Once we arrived, his absolutely incredible surgeon talked us through the surgery again. ‘He’s in good hands,’ the surgeon reassured us. But reassurance can only go so far. Eventually, the team came up to us and said, ‘It’s time.’ We carried him to the operating room hallway and saw the doors shut behind him. I collapsed into my husband’s arms. I was so angry our son had to go through this. He was just 2 days shy of being 4 months old.
The hours ticked by so slowly and all we wanted to do was see his face again. To know he was ok. We walked back and forth in the waiting room because sitting didn’t seem acceptable. We watched other parents crying and couldn’t help but wonder what their child was going through. Finally, a few hours later, we got the word. ‘Surgery number 1 went perfectly. You can come back and see him now.’
His head was wrapped in a gauze turban with adorable little ears on top. His cries were deep and scratchy from being intubated, but he was ok and that was all that mattered to us!
Seeing his large s-shaped incision on his head absolutely took my breath away. The stitching was so intricately placed to make for a clean scar. The shape of his skull changed dramatically.
The weeks after surgery were rough. There were lots of sleepless nights from night terrors. Lots of trying to determine if he was in pain or just hungry. The fear of having to wash his incision shook me to my core. But through it all this boy showed us he was tougher than we were and he bounced back so quickly!
We were ecstatic to see his team for his follow up to show how well he was progressing. We didn’t know that appointment would end in more bad news.
The look of concern in his surgeon’s eyes made me realize that something wasn’t right. Having springs placed in the skull leaves the head very lumpy, so we assumed they were doing what they needed to do. But after an x-ray, they determined that one of the springs had twisted. ‘He will need an additional surgery to correct it,’ they told us. ‘For some reason, half of his skull expanded faster than the other.’
It was no fault of the surgical team. His skull just decided to be difficult. Two weeks later, we found ourselves back in the surgical waiting room with those same feelings as the first time around. The fear lessened just a bit because he did so well the first time. We had full confidence that he would do a-ok this time as well. The desk clerk let us know they were finishing up and we would just have to wait for the surgeon to come out and talk to us. Ten minutes went by…then twenty…then thirty…then forty-five. I knew something was wrong and I was in a total panic. Instead of the screen showing he was in the pacu waking up from anesthesia, it was showing he was still in the O.R.
Finally, almost an hour later, they brought us back to a private room in the pacu to explain what happened. The surgery itself went perfectly and after he was stitched up again it was time to extubate him. ‘But as we removed the tube, Conor completely stopped breathing,’ we were told. They had to give him a boatload of medication and do assisted breathing to get him back. His heart rate was through the roof from all of the medication and he was completely out of it for hours afterwards. Knowing that we could have lost him that day absolutely killed me. I thank God every day that he had an experienced group working in the O.R that day. They are truly angels on earth.
Surgery number 3 to remove all of his springs came on August 2nd. It went by so quickly. He was only gone for a few hours and we went home that same day. After the anesthesia wore off, he was clapping his hands and blowing kisses to his big brother Logan. At that point, I knew everything was going to be okay.
It has been a long road and some days I have no idea how we made it through this. We were so blessed to find a wonderful support group on Facebook where parents of other children undergoing reconstructive surgery for craniosynostosis could share their journey to help. We have made friends with other warrior mama’s and have watched these beautiful babies thrive after surgery. I am so thankful for these families that offered support. They even began a nonprofit called Cranio Care Bears in order to send wonderful care packages free of charge to little ones going through surgery. It is such a wonderful feeling knowing that at the touch of a finger you have a family outside of your own to be there for you.
Conor is now a rough and tumble 1-year-old boy who is obsessed with hockey (LET’S GO PENS!), loves picking on his big brother, dances to every song he hears, and loves to flirt with the ladies!
This week I stumbled upon a quote. It read, ‘Children with craniosynostosis aren’t sent to us because we are strong enough parents, children with craniosynostosis teach us to be strong enough parents.’ His next follow up is at the end of April. At this point, all I can pray for is good news. We have full faith in his team and we know whatever the outcome. He is already a super hero!”
This story was submitted to Love What Matters by Bethany Schutzman of Pittsburgh, Pennsylvania. You can follow her journey on Facebook here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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