Early detection of disease avoids invasive surgery

Melissa Strle
Times Reporter

 

Four-month-old Jonathan Schultz from the Standard area recently had a surgery at the Stollery Children’s Hospital in Edmonton to correct a condition he was born with called sagittal craniosynostosis.
Early detection of this disease enabled young Jonathan and the Schultz family to avoid an invasive surgery that would have been required after six months of age.
“If you catch it in a timely manner, you can do a less invasive surgery for them because their skull bones are so soft and pliable still, but after six months they have to do a way more invasive surgery to fix the skull shape and allow for room for the brain to grow because the bones start to harden,” said Jonathan’s mother Sarah Schultz, who is a nurse.
Jonathan was born with a bony ridge on the top back of his head and an undeveloped or closed soft spot. If the condition had gone untreated, it might have resulted in migraine and vision problems as well as seizures when Jonathan was older.
Schultz said around the time he was born, she started noticing certain things on his head such as a flat spot, pinched temples, a rounded forehead and an oval shaped head instead of a typical rounded head.
“All of us noticed right away and I asked if it was normal,” she said. “Our doctor said ‘don’t worry about it, it will be fine.’”
Schultz thought perhaps the visual signs she noticed might have been from delivery and inquired further at Jonathan’s two-week and six-week appointment, but still no diagnosis was revealed.
Surprisingly, a reader of Schultz’s blog called in when she noticed Jonathan’s picture and head shape, and thought he might have the same rare condition as her own daughter. Schultz followed up on this advice and Jonathan was eventually diagnosed with craniosynostosis.
“The ridge in itself was very obvious but I think it’s rare enough that our doctor had probably never seen it before, so it was a missed diagnosis,” she said. “As a healthcare professional myself, I don’t know if I would have caught it.”
The surgery happened very quickly, less than 20 days after diagnosis. Schultz said the surgery went very well but it was scary to see Jonathan so swollen and puffy, and he was in some pain and discomfort afterwards.
Jonathan started wearing a helmet a month after surgery in order to allow his skull to grow into the proper shape, and he will wear it for four months.
Schultz recommends taking a proactive approach if parents are uncertain about their baby’s head shape.
“Bring it up to your healthcare practitioners and you can self-refer to the head shape clinic at Alberta Children’s Hospital until they’re four months old,” she said.
According to Alberta Health Services, on average, one in every 2,000 babies is born with craniosynostosis. September is craniofacial awareness month.