Theo’s Cranio Story

On July 15, 2015, our hearts burst with joy as we welcomed our sweet baby Theo into this world. After a long labour and delivery, I finally had the chance to hold him in my arms, and my husband and I could not stop marveling at how adorable and amazing he was. Like many newborns, Theo’s head was a bit misshapen at birth. However, we were quickly reassured by the doctors and nurses that this was due to the challenging delivery, and that his head shape would even out over the next week or so.

Following our discharge from the hospital, we didn’t have any concerns with Theo’s head shape until we met with his pediatrician for his one-month well-baby visit. At that point, she expressed some concerns regarding the size of his soft spots (i.e., they were very small), and the slight ridge that could be felt on the top of his head. We were told not to worry, but made a plan to monitor his head growth, and follow up in a month to determine the next steps. As a new mom who was enamored with her son, and desperately wanted reassurance that all was okay, I tried to shelf any concerns I had, and focused on enjoying my time with my beautiful baby.

However, by the time Theo was 2 months old, one of his soft spots had closed completely, and his pediatrician was now concerned that he may have a form of “craniosynostosis.” I had never heard of this term before, but just hearing the pediatrician’s explanation of it scared me. Immediately, I asked what the worst case scenario could be, and we were told that Theo might require major surgery on his skull. In that instant, my mind began to race with worries and questions regarding what this could mean for Theo’s brain development, and his long-term well-being. However, his pediatrician reassured us that Theo was healthy and thriving, and that surgery was the worst case scenario. She seemed quite confident that Theo’s case was mild and may only require monitoring. We left the doctor’s office with heavy hearts, and plans for an X-ray to investigate things further. However, we were hopeful that Theo wouldn’t require major surgery.

Within days of meeting with the pediatrician, we were referred to The Hospital for Sick Children in Toronto, Canada. Before we could even fully process what was happening, we had an appointment for an x-ray and CT scan, as well as consultations with a craniofacial specialist, a neurosurgeon, and a neuro-ophthalmologist. While I was grateful for the prompt response to our referral, I was completely overwhelmed by the number of specialist appointments that had been set up for Theo, and I became increasingly concerned as to what all of this would mean for him. Through these appointments, we learned that Theo did not have any signs of intracranial pressure (ICP), which was a huge relief. However, he was officially diagnosed with mild case of sagittal synostosis. Our surgical team provided us with a detailed explanation of the surgery required to correct his condition, along with the benefits and risks of the surgery. Because Theo did not yet show any signs of ICP, the surgery was presented to us an option, and we were told that it would be for “cosmetic reasons” only. (To this day, I still have a hard time saying this, as I know in my heart of hearts that this surgery is so much more than a cosmetic procedure). However, at the time, we hated the thought of putting our son through a major surgery, especially if it was not 100% necessary. Moreover, Theo was (and is) absolutely beautiful and perfect in our eyes, so we decided to defer the surgery for the time being, and set up a plan for ongoing monitoring.

For the next four months, we continued to attend regular follow-up appointments with Theo’s team of specialists, and with each appointment, doubts regarding our decision to simply monitor his condition crept in. Every night after Theo went to bed, I found myself researching craniosynostosis and its long-term implications, and I began to connect with other cranio parents regarding their journeys. Slowly but surely, my husband and I began to realize that this was much more than a “cosmetic” issue.

Eventually, the “what-ifs” and questioning became too much, and we knew that we had to make a firm decision regarding surgery. Around that time, Theo’s team of specialists also indicated that his case had moved from “mild” to “moderate” (within mere months). At that point, the risk of not correcting his craniosynostosis seemed too great, and we knew that our worst case scenario (i.e., surgery) was inevitable. So, we gathered all of the strength, faith, and optimism we possibly could, and made the decision to go ahead with the surgery. Our decision to proceed with the surgery was winding and emotional, but we had incredible support from our families and friends, including other parents who had children with craniosynostosis, as well as the Cranio Care bears, and our amazing surgical team. As scary as this time was for us, we knew that we would make it through, and that Theo would thrive.

In the months and days leading up to Theo’s surgery, my heart ached in a way that I never thought possible. In my eyes, Theo was absolutely perfect, and there was nothing that I wanted to change about him. At times, I became overwhelmed by my emotions, and I struggled to articulate the intensity of the worry, pain, and sadness that I was feeling. Every night, I tried to memorize Theo’s head shape and his precious facial features exactly as they were, and I prayed that he would still be the same loving, funny, and sweet boy following his surgery. It was an incredibly hard time, but in my heart, I knew that the surgery was important and necessary for Theo, so I resolved to stay strong, positive, and hopeful for him. Unfortunately, Theo’s original surgery date had to be rescheduled due to an unexpected illness, and the discovery that he also had neutropenia. However, after a month and a half of further testing and appointments, Theo was deemed healthy and strong enough for surgery. On August 24th 2015, at 13 months of age, Theo underwent a full CVR for sagittal synostosis.

I don’t think I will ever forget the intensity of the emotions I felt that day, and I still don’t know how I managed to hand Theo over to the nurse to be brought into the OR, but somehow (just like all the parents we spoke to beforehand said I would), I found my strength, and I was able to put my utmost trust in our amazing surgical team. In the end, Theo’s surgery was a great success. Within 24 hours of his surgery, I was rocking him in my arms, and he was grasping the “T” charm on my necklace that he always held to soothe himself. There were some painfully hard days while we were in the hospital, but when Theo began to smile and giggle three days post-op, we knew that our baby boy was going to be just fine. Although he was quite swollen, with a cool, wavy scar that required a lot of attention and care, our resilient boy quickly showed us that he was the same affectionate, sweet, and joyful Theo that we loved with all of our hearts.

Shortly after his surgery, Theo was fitted for a helmet, which he rocked for 4 months. Now, at one-year post-op, he is full of smiles, love, and personality, and we couldn’t be happier to see our boy thriving so beautifully. He truly is a little warrior.

As it is for many parents, our cranio journey has been emotional and rocky at times. However, we can’t deny that this journey has made us more resilient as a family, and we are beyond grateful for the amazing little human that we get the opportunity to raise and share this life with.