My sweet boy Elliot was diagnosed with moderate-severe saggital at about 2 months old, and 3 months later COVID happened. We needed two referrals just for this diagnosis, as the first pediatrician completely dismissed out concerns and wouldn’t consider the idea of craniosynostosis or surgery until he was at least a year old. We got referred to a Cranio clinic after getting a second opinion and we were told 9-12 months was the best age range for his surgery. We were told it was cosmetic.

There were no follow up appointments or phone calls to see how he was doing. I called weekly to see what the status of his surgery was, and I was told they had no OR time for Cranio kids because of COVID. Then I finally got an answer when he was 9 months old – his surgery would be delayed, possibly til he was 16 months. We were devastated. I spent the whole day calling every hospital in Ontario within an 8 hour drive. Everyone had the same answer. I finally called McMaster Children’s Hospital in Hamilton, who told me that Cranio surgery was NEUROSURGERY, and they had lost no OR time. They got our son in for surgery within 3 weeks.

Once our new surgeon saw Elliot in person for the day of his surgery, he knew something was wrong. He sent him for an ultrasound and it was found that he had hydrocephalus from the pressure on his brain. Surgery had to be replanned for this and was delayed another week. We were told it was possible Elliot may need a permanent shunt in his brain because it had developed under pressure for so long. They would have wanted Elliot in for surgery at 5-6 months, not 9-12.

Our son came out of surgery the next week wonderfully with no complications! Our surgeon said it was the most severe case he ever dealt with and they were so relieved he got surgery when he did. We slipped between the cracks of our ever-deteriorating healthcare system.

Fast forward to today, Elliot is thriving with no delays or issues, and luckily, no shunt! We are so grateful for the skilled surgeons that saved our boy’s brain.

My message to all Cranio parents: advocate! You know your child better than any doctor. Push for what you want because the health of your child is more important than a doctor’s ego.