IronJambo Posted February 11, 2020 Share Posted February 11, 2020 Anyone had experience of having a kid with this? https://www.nhs.uk/conditions/craniosynostosis/ Quote Link to comment Share on other sites More sharing options...
IronJambo Posted March 29, 2020 Author Share Posted March 29, 2020 Bump I thought kickback had the answers to everything but I guess I caught you all out with this one. Before I go further, this isn't a sympathy post, I don't need that. My wee boy was born with this birth defect on 5th Feb. This effects something like 1/2500. To summarise, the soft spots towards the back of his head fused in the womb so he has an elongated head. It's flat at the sides and slightly pointy towards the top. His head looks normal from the front. If you were to think that his head was a little bit like a rugby ball you'd be in the right ball park. Like Stewie from Family Guy but the other way around. In any case, if this is untreated his brain will grow quicker than his skull. Not good. I've done my best to keep away from internet heresay and try to focus on the plus points and the facts. The plus points... He doesn't have lukeimia or something really nasty like that. He doesn't have a terminal illness. Treated correctly he will most likely have a normal life. 50 years ago or so, he'd have been "special", with a tiny head and probably would've died really young. We're seeing specialist consultants in Oxford in May and will have a real idea of what he needs then but we're fully expecting he'll need the surgery shown here at around 38 seconds The NHS are being championed just now because of the pandemic. We need to remember that these guys are absolute heroes every day. We have ****ing amazing medical staff in this country. I've made easier posts. Quote Link to comment Share on other sites More sharing options...
Boof Posted March 29, 2020 Share Posted March 29, 2020 All the very best to you and your family, IronJambo. My 2nd was X-rayed with a suspicion of this but it wasn't. Jeez - nearly 27 years ago. If it had been I don't think his prognosis would've been as good. You're right about the NHS - a national treasure that must be protected by all means. Quote Link to comment Share on other sites More sharing options...
IronJambo Posted March 29, 2020 Author Share Posted March 29, 2020 1 hour ago, Boof said: All the very best to you and your family, IronJambo. My 2nd was X-rayed with a suspicion of this but it wasn't. Jeez - nearly 27 years ago. If it had been I don't think his prognosis would've been as good. You're right about the NHS - a national treasure that must be protected by all means. I'm not so sure, I'm sure they were also good 27 years ago. Whilst trying to avoid heresay I've not hidden behind a rock with this and been happy to tell people I know that he's got a battle ahead of him. In doing so I stumbled across a bloke at my work from the Mumbles that's based in Swansea who's 16 year old lad had the very same thing. The lad in question has played rugby and football since 5 years old, done well and school and developed normally, growing to over 6 foot. Quote Link to comment Share on other sites More sharing options...
The Roller Posted March 29, 2020 Share Posted March 29, 2020 Sending my❤️ and 🙏🏻’s to you all. Quote Link to comment Share on other sites More sharing options...
sadj Posted March 30, 2020 Share Posted March 30, 2020 4 hours ago, IronJambo said: Bump I thought kickback had the answers to everything but I guess I caught you all out with this one. Before I go further, this isn't a sympathy post, I don't need that. My wee boy was born with this birth defect on 5th Feb. This effects something like 1/2500. To summarise, the soft spots towards the back of his head fused in the womb so he has an elongated head. It's flat at the sides and slightly pointy towards the top. His head looks normal from the front. If you were to think that his head was a little bit like a rugby ball you'd be in the right ball park. Like Stewie from Family Guy but the other way around. In any case, if this is untreated his brain will grow quicker than his skull. Not good. I've done my best to keep away from internet heresay and try to focus on the plus points and the facts. The plus points... He doesn't have lukeimia or something really nasty like that. He doesn't have a terminal illness. Treated correctly he will most likely have a normal life. 50 years ago or so, he'd have been "special", with a tiny head and probably would've died really young. We're seeing specialist consultants in Oxford in May and will have a real idea of what he needs then but we're fully expecting he'll need the surgery shown here at around 38 seconds The NHS are being championed just now because of the pandemic. We need to remember that these guys are absolute heroes every day. We have ****ing amazing medical staff in this country. I've made easier posts. ❤️ Quote Link to comment Share on other sites More sharing options...
151 Posted March 30, 2020 Share Posted March 30, 2020 Hi mate never noticed this thread before. My son was born with Sagittal Craniosynostosis in 2014. He had his operation on April 30th 2015 at Yorkhill in Glasgow. His head is perfect now and was back to normal fairly quickly after the OP we were told from specialists to forget it ever happened as it was all healed up perfectly. We do alot of charity work for the Ronald McDonald house as thats where we stayed during the 6 day stay he had at hospital. Sorry I never saw this sooner mate as I could've put your mind at rest a little sooner. The day itself was quite scary as you could imagine but my sons head was described as "boat-shaped" by doctors and it had to be done for not only cosmetic reasons (bullying etc) but also for brain development. Drop me a PM if there is any other questions mate I know what you and your family will be going through. Quote Link to comment Share on other sites More sharing options...
IronJambo Posted March 30, 2020 Author Share Posted March 30, 2020 1 hour ago, Wham Bam Austin McCann said: Hi mate never noticed this thread before. My son was born with Sagittal Craniosynostosis in 2014. He had his operation on April 30th 2015 at Yorkhill in Glasgow. His head is perfect now and was back to normal fairly quickly after the OP we were told from specialists to forget it ever happened as it was all healed up perfectly. We do alot of charity work for the Ronald McDonald house as thats where we stayed during the 6 day stay he had at hospital. Sorry I never saw this sooner mate as I could've put your mind at rest a little sooner. The day itself was quite scary as you could imagine but my sons head was described as "boat-shaped" by doctors and it had to be done for not only cosmetic reasons (bullying etc) but also for brain development. Drop me a PM if there is any other questions mate I know what you and your family will be going through. Good to hear your boy came through it well. That's 2 out of 2 people I've come across that have had a positive experience. I'll probably be more at ease after we've seen the consultants in May. Quote Link to comment Share on other sites More sharing options...
luckyBatistuta Posted March 30, 2020 Share Posted March 30, 2020 2 hours ago, Wham Bam Austin McCann said: Hi mate never noticed this thread before. My son was born with Sagittal Craniosynostosis in 2014. He had his operation on April 30th 2015 at Yorkhill in Glasgow. His head is perfect now and was back to normal fairly quickly after the OP we were told from specialists to forget it ever happened as it was all healed up perfectly. We do alot of charity work for the Ronald McDonald house as thats where we stayed during the 6 day stay he had at hospital. Sorry I never saw this sooner mate as I could've put your mind at rest a little sooner. The day itself was quite scary as you could imagine but my sons head was described as "boat-shaped" by doctors and it had to be done for not only cosmetic reasons (bullying etc) but also for brain development. Drop me a PM if there is any other questions mate I know what you and your family will be going through. Glad everything worked out for your lad, this is a great post for helping IJ through a tough time👏 6 minutes ago, IronJambo said: Good to hear your boy came through it well. That's 2 out of 2 people I've come across that have had a positive experience. I'll probably be more at ease after we've seen the consultants in May. Hope everything works out for your son IJ ❤️ Quote Link to comment Share on other sites More sharing options...
151 Posted March 30, 2020 Share Posted March 30, 2020 3 hours ago, IronJambo said: Good to hear your boy came through it well. That's 2 out of 2 people I've come across that have had a positive experience. I'll probably be more at ease after we've seen the consultants in May. Ours was a long journey, or at least felt like it at the time. We asked about it at Ninewells because his head was visibly different from other babies and the doctors there said it was due to him being breach in the womb. It then continued and for want of a better phrase worsened (cant think of a different term) and we enquired again and were referred to the childrens hospital in Glasgow. The consultants there straight away knew what it was and came up with a plan for our son. I am assuming this is what you will be recieving in May? From there we got our appointment and were admitted the day before. He had to fast for 12? Hours i think and went under at 8oclock bang on. The doctors assured us they would keep us in the loop but we didn't hear anything 'til 5 oclock that evening when they called to say it was all a success and he was fine. I am not sure why but I didn't ask. It is actually mental when you think about the actual procedure itself and it is scary, I try not to but every time I do it makes me immensely proud of what he endured and has came through. What I will say is the immediate after care is hard and quite upsetting. My son couldnt see for 3 days due to the swelling on his face so it was hard for him to distinguish whether he was being put down to get jabbed with needles or to be comforted to sleep. He needed alot of Mum time to smell her and hear her voice. (I was in the forces at the time so although I was there for the whole duration of the op he was used to Mum). So if your son likes a certain blanket or listens to a certain song to sleep etc take it with you to the hospital. Also enquire about a Ronald McDonald house I know they have them all over the UK. We were in for 7 days total think it was a 6 night stay. They take away all other worries ie. Where your going to sleep etc. I know some of this post will be hard to read I didn't want it to come across that way. It drove home for me the meaning of the word Hero, and he refers to his scar as his bravery scar. It isnt like the one on the video you posted it is a "zig zag" scar from ear to ear. You only see it when he gets his short back and sides. Any other questions honestly just PM me mate but I am sure it will all work out ok - these guys truely know what they are doing. Mon the NHS. Quote Link to comment Share on other sites More sharing options...
151 Posted March 30, 2020 Share Posted March 30, 2020 3 hours ago, luckyBatistuta said: Glad everything worked out for your lad, this is a great post for helping IJ through a tough time👏 Hope everything works out for your son IJ ❤️ Thanks mate 👍 Quote Link to comment Share on other sites More sharing options...
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