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A reader diagnosed our baby

When a woman saw Jonathan’s photo she realized that he had the same skull problems as her daughter

Because of a concerned blog reader, our baby was diagnosed and had 
surgery for a rare skull disorder.

If there’s one single reason to make the years worth blogging, even among all the hateful, nasty, rude emails and comments I have received, it was when a blog reader emailed me and diagnosed our baby with a rare skull defect. I have dubbed that email one of the greatest blessings of our life.

I have used my blog, Nurse Loves Farmer, to document our lives virtually for the past several years. It is an online journal, baby book for all three of our kids, as well as my thoughts, musings and heart written out for all to see. I have written monthly updates with measurements, milestones and pictures for all of our kids until they turn two years old, so when I posted Jonathan’s two-month update, that same day I got an email from a blog reader who had never commented or introduced herself to me before.

She wrote that she had debated many times writing me this exact email but hesitated because she didn’t want to offend me. She decided it was worth the risk, and I’m forever grateful that she went out on a limb to share her concerns with me. Her concerns were over Jonathan’s head shape, which had very distinct features. These features were a protruding forehead, pinched-in temples and a bony ridge on his head. He was also starting to have a flattened area on the back right side of his head that was clearly evident in photos (I definitely noticed that myself). She said he exhibited the same skull shape as her daughter did, and she also brought up the same concerns to her doctor as I did to mine. Jonathan was born with that bony ridge on his head, as well as no soft spot on the back of his head. For the first six weeks of his life my doctor brushed it off and told me, “no it will be fine, don’t worry about it,” even though as a nurse I knew it wasn’t normal. Her doctor also brushed off the bony ridge and closed soft spot as “normal.” We were told not to worry, but we did. The motivating reason why she emailed me, was that her daughter was diagnosed with a congenital birth defect called craniosynostosis at six months old, and she needed to have an eight-hour surgery to repair her skull. Craniosynostosis is a condition where the skull bones fuse early, when normally they fuse well into adulthood. If this is diagnosed early enough, before the baby is 16 weeks old, they are often eligible for a far less invasive surgery with fewer complications and shorter operating room time and hospital stay.

And that’s exactly what happened to Jonathan.

From the day I received the email, to a consult with a neurosurgeon at the Stollery Children’s Hospital (where I used to work) in Edmonton, to his surgery, took only 20 days. It was the hardest thing in my life that I’ve ever had to do — handing over our 11-week-old baby to an operating room nurse so he could have skull surgery. They removed a piece of bone from his skull on the top where the ridge was, and cut down bone on the sides of his skull to allow room for his brain to grow. If left untreated, not only would he have a severely misshapen head, he could have developmental delay, vision problems, migraines and even seizures.

Jonathan is wearing a cranial-shaping helmet to make his skull grow in the proper shape that it needs too. It puts gentle pressure on the front and back of his head so that his head grows wide. He went through surgery and recovery like a pro and he is absolutely a rock star with his helmet, he didn’t even really have an adjustment period.

Social media can come with the hassle of dealing with internet trolls and keyboard warriors — bullies who hide behind the security of their computer screens. I’ve been a victim many, many times, but that’s all worth it now because my blog saved my baby from an invasive surgery. It’s now my mission to reach as many people as possible to spread awareness about craniosynostosis so that other babies are diagnosed early like Jonathan.

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