Craniosynostosis
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Craniosynostosis
My youngest had surgery for the above yesterday. I'm posting this not for sympathy but for awareness as it's something that not many have heard of and there's even a huge amount of ignorance in the medical profession regarding it.
A brief explanation (and in a non scientific way) is that this is known as a birth defect where a child is born with one or more of their sutures (soft spots) already fused. This then effects the development of the skull.
In wee Hamish's case, his saggital suture was already fused which caused his head to be narrow and long. Boat shaped, or rugby ball shaped you might say. Think Stewie from family guy but from back to front. His head was unable to grow out the way, leaving it to grow any which way it could which meant from the front and back. This would have continued throughout his life. The bulge on the front of his head (bossing) was continuing to grow. He's 19 months old and we've always struggled to get a hat on him so I would imagine there would have been no chance of getting a bicycle helmet on him in the future. The surgery to correct this is medically termed as cosmetic (wrongly in my opinion). Left untouched his brain would be in danger of growing quicker than his skull causing all sorts of unthinkable things.
The surgery involved lifting the top of his skull off from the middle part back. They then broke that into smaller pieces before treating it like a 3D jigsaw and forming it into a proper head shape. His forehead, and the rest were reconstructed from the entry point that the removal of the rear section gave them.
He's done wonderfully well and we're expecting to get him home on Tuesday.
Here are some pictures of his head post surgery as this thread is worthless without them and I'm more than happy to answer any questions.
You can see the change in his head shape in this before and after:
This is 3D imaging from his CT scan at 6 months old. There should be a clear line showing the saggital suture running from behind the fontanelle(the largest slightly diamond shaped hole) down the middle to the back of the skull but if you look closely you can see there's a slight ridge where it's already fused together.
A brief explanation (and in a non scientific way) is that this is known as a birth defect where a child is born with one or more of their sutures (soft spots) already fused. This then effects the development of the skull.
In wee Hamish's case, his saggital suture was already fused which caused his head to be narrow and long. Boat shaped, or rugby ball shaped you might say. Think Stewie from family guy but from back to front. His head was unable to grow out the way, leaving it to grow any which way it could which meant from the front and back. This would have continued throughout his life. The bulge on the front of his head (bossing) was continuing to grow. He's 19 months old and we've always struggled to get a hat on him so I would imagine there would have been no chance of getting a bicycle helmet on him in the future. The surgery to correct this is medically termed as cosmetic (wrongly in my opinion). Left untouched his brain would be in danger of growing quicker than his skull causing all sorts of unthinkable things.
The surgery involved lifting the top of his skull off from the middle part back. They then broke that into smaller pieces before treating it like a 3D jigsaw and forming it into a proper head shape. His forehead, and the rest were reconstructed from the entry point that the removal of the rear section gave them.
He's done wonderfully well and we're expecting to get him home on Tuesday.
Here are some pictures of his head post surgery as this thread is worthless without them and I'm more than happy to answer any questions.
You can see the change in his head shape in this before and after:
This is 3D imaging from his CT scan at 6 months old. There should be a clear line showing the saggital suture running from behind the fontanelle(the largest slightly diamond shaped hole) down the middle to the back of the skull but if you look closely you can see there's a slight ridge where it's already fused together.
- missF
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Re: Craniosynostosis
Wow. What a wonderful and informative post. Thanks for posting this. Wishing you all some rest and recovery now after what must have been a long time of worry.
Onwards now to a bright future for wee Hamish who looks like a bright star. And well done bright parents and brilliant doctors
Onwards now to a bright future for wee Hamish who looks like a bright star. And well done bright parents and brilliant doctors
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Re: Craniosynostosis
Very best wishes to the wee chap and to all your family!
Steve
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Take nothing but pictures, leave nothing but footprints, kill nothing but time
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Re: Craniosynostosis
What an amazing little chap and well done to all of you on getting through what must have been a terrible difficult time. Here's to many years of him riding a bike and playing with his mates without that condition in his way.
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Re: Craniosynostosis
Very brave indeed.
Wishing him a wonderful life.
scooter
Wishing him a wonderful life.
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Re: Craniosynostosis
Poor little guy. Wishing him the very best for his recovery. He’ll brag about that scar when he’s older though.
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Re: Craniosynostosis
Must admit I had never heard of this.
Thanks for the informative post and I wish all the best for a speedy recovery to Hamish.
Thanks for the informative post and I wish all the best for a speedy recovery to Hamish.
Kip
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- jkbarnes
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Re: Craniosynostosis
Thank you for sharing this and raising awareness. From the pics, it looks like the surgery has been a great success! I hope you’ll share more images of little Hamish moving forward so we can follow his progress.
Drew
Re: Craniosynostosis
Great to hear that the surgery went well and that he will be able to continue his recovery from home.
Wishing him a speedy recovery.
Neil
Wishing him a speedy recovery.
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Re: Craniosynostosis
Best wishes to Hamish and the rest of your family.
It must have been a tough time.
It must have been a tough time.
Richard
Re: Craniosynostosis
Never even heard of this so I appreciate the education.
One of my best pals has a daughter who suffers from a rare condition I cant even pronounce, which makes her fit badly. Theres a procedure, but again its classed as 'elective' despite her age and its severity as they say theres a slim chance she may grow out of it. I agree fully that when it comes to a kids quality of life, it should never be cosmetic or elective.
Absolutely superb news hes doing well. Hope you are all pulling through it together
One of my best pals has a daughter who suffers from a rare condition I cant even pronounce, which makes her fit badly. Theres a procedure, but again its classed as 'elective' despite her age and its severity as they say theres a slim chance she may grow out of it. I agree fully that when it comes to a kids quality of life, it should never be cosmetic or elective.
Absolutely superb news hes doing well. Hope you are all pulling through it together
- CHZacc
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Re: Craniosynostosis
Wishing him all the best in his recovery, i've found that kids are way more resilient than adults. (One thing you may want to do is blank out his NHS number/dob etc, could be useful for those nasty types out there looking to steal id's and such)
David
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- Paul Drawmer
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Re: Craniosynostosis
Amazing work by the surgical team, and amazing stress for the parents! All the best for a great recovery. I've always said the JR are wonderful.
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Re: Craniosynostosis
Can't really add much to the above sentiments, best wishes to the little man and all your family, wishing a speedy recovery.
Stephen
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