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Baby #6 was born in November of last year, and very quickly we realised his head was, well, a little funny shaped. On checking him straight after birth our midwife noticed his soft spot at the back was difficult to locate (if it was there at all), but at the time she wasn’t particularly concerned, babies often have funny shaped heads that resolve within a few days, weeks at the most.

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His didn’t tho, instead we became aware of a ridge running along the top of his head and a somewhat ‘squashed’ look overall which led me to google “baby funny shaped head” (yes, I really did google exactly that) and, after going past all of the ‘it will even out soon’ posts came across the terms scaphocephaly and craniosynostosis.

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As soon as I saw photos of other babies with saggital craniosynostosis my heart sank, they were exactly like Josiah’s head. Knowing tho, that Dr Google is no substitute for real medical advice I told myself that maybe it wasn’t that, talked again with my midwife and chiropractor (who had both been watching his head closely since day 1) and we went to see a GP. Thankfully, we found one who had heard of craniosynostosis and who had paperwork from the hospital detailing what was required for a referral. Win win!

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At the time I had no idea that many parents struggle to find healthcare professionals who are willing to listen to their concerns as many are unaware of what craniosynostosis is, let alone what treatment is required. I’m so very grateful for the support we received right from the start. The GP we saw was fantastic at communicating with the hospital, resulting in an appointment in the craniofacial clinic less than a week later. By now Josiah was 5 weeks old, and this stressed out mama was doing everything imaginable to hope nothing was wrong while at the same time knowing it wasn’t actually all ok. We had x-rays taken, saw the plastic surgeon at the Mater Children’s and a diagnosis of saggital craniosynostosis was confirmed. The surgeon we saw recommended he have cranial vault reconstruction (CVR) surgery and said that ideally she would hope to do that when he was between 7 and 14 months of age. A CVR requires both a plastic surgeon and a neurosurgeon, so we were scheduled in to see a Neurosurgeon a few months later and also had a CT scheduled which would give a much clearer picture for the surgeons than the x-rays we had already had. The surgery involves making a zig-zag incision across the head from ear to ear (zig-zag so that hair will more easily cover it as he grows), removing the skull bones, reshaping them into a more normal shape then replacing them and securing with dissolvable plates and screws. Needless to say, not the most fun thing to have done to one’s head! Josiah doesn’t appear to have any indicators that his craniosynostosis is part of a genetic syndrome like some children do tho so, Lord willing, if the CVR is successful, that will be the only intervention he needs for craniosynostosis.

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Last week we got a call from the Mater to say that his surgery has been booked for November 5th, his first birthday! They were phoning to ask if we would prefer to delay by a month rather than have it done on his birthday, but we said we just want it done asap, he’s not aware of birthdays yet anyway, and it’s kinda cute really that he’ll be getting a “new” head for his birthday, it will just make that day even more significant!

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We would love your prayers for him and the rest of us over the coming weeks. I feel very much at peace about it, knowing the Lord will go before us and carry us through, but also aware that it’s going to be a big thing for our family to go through.

 

Josiah’s Cranio Journey

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