I'll take a copy of this to our next eye appointment at Sutton Eye Hospital to make sure so we get the squint issue properly checked/confirmed.
Saturday 10 August 2013
Letter from GOSH
Thursday 8 August 2013
Post-Op Appointment on 1 August
Last week, Thurs 1st August, was our first and only post-op appointment at Great Ormond Street Hospital (GOSH), London since Kate's frontal orbital remodelling surgery for left-sided uni coronal craniosynostosis (cranio surgery) on 17th April 2013.
I persuaded hubby to get time off to meet me there and decided, as it was school holidays for Nikki, that we'd make a day-trip to London and go to Coram Fields (right near GOSH) as well as to the hospital.
It was a very hot day so went up at lunchtime to avoid the sun at that point on the train, then bus, and I was pleasantly surprised to find water in the paddling pool at Coram Fields.
Nikki enjoyed that & playing in the playground for bigger kids while Kate slept in her pushchair.
When Daddy arrived Kate woke & we had ice-cream before heading into the VERY hot consultant waiting area.
My questions and Dr Britto's answers are below:
Q. Now that it's done (I didn't want to know the gory details before), what exactly did you do to make her forehead straight?
A. Bone manipulation, scraping and breaking - that's why you can feel lumps on her head, but it's all fine & nothing to worry about.
Q. Her left eye socket still seems bigger than the other. The Ophthalmologist noticed this. I thought you were dealing with that?
A. What do you mean by bigger? We did and she looks fine.
Q. What age does your skull normally fuse to become your adult skull?
A. Early teens normally.
Q. Would it ever re-fuse, the coronal suture, again now?
A. No, never heard of that.
Q. We were told by the Ophthalmologist that she doesn't have a squint. Is that the case?
A. If that's what they say, then she doesn't. That's good.
Q. Could that change? Could she develop a squint later?
A. No, that's never happened before.
Q. I've noticed she still has an asymmetry and her face still looks weird in a mirror. Wasn't the surgery supposed to correct that?
A. No. The surgery changes the skull, forehead & stops any further facial asymmetry as it grows but it won't correct what has already happened.
Q. She still has a few small bits of scab that look a bit green, is that ok?
A. Yes, they will just fall off when they're ready. Just keep it clean.
Q. How long do you continue to see kids for after surgery, until what age?
A. Normally about age 10.
Q. Is there anything we should do, or look out for going forward?
A. No.
Q. When do we see you again?
A. Next appointment in 2 years.
Q. What will that be like, like this, just a general catch-up/chat?! (I meant about any more procedures/tests)
A. Yes, just to see me.
So, all is at it should be from their point of view. For me, except me being able to notice the eye-socket and slight facial asymmetry she's just perfect. She always seemed perfect to me anyway. I feel that we're done. This is really now behind us and the surgery already seems like a distant memory.
I've had contact from a few people going through this and I really hope this blog and the detail helps them/you. Do feel free to contact me if you want to ask any other questions about emotions, swelling, bruising, post-op recovery or see more of our (pretty traumatic) post-surgery photos to prepare.
I don't suppose I'll be posting here ever again! Maybe I will in 2 years after our next appointment, if Blogger still exists!
Here's a last few photos. Before, during & after.
The latest is one of my latest favourite pics of Kate, happy as ever, with her two big dimples, gappy teeth and one curl on top of her head. She is so cute & funny, she makes us unbelieveably happy.
Wendy Ager
I persuaded hubby to get time off to meet me there and decided, as it was school holidays for Nikki, that we'd make a day-trip to London and go to Coram Fields (right near GOSH) as well as to the hospital.
It was a very hot day so went up at lunchtime to avoid the sun at that point on the train, then bus, and I was pleasantly surprised to find water in the paddling pool at Coram Fields.
Nikki enjoyed that & playing in the playground for bigger kids while Kate slept in her pushchair.
When Daddy arrived Kate woke & we had ice-cream before heading into the VERY hot consultant waiting area.
My questions and Dr Britto's answers are below:
Q. Now that it's done (I didn't want to know the gory details before), what exactly did you do to make her forehead straight?
A. Bone manipulation, scraping and breaking - that's why you can feel lumps on her head, but it's all fine & nothing to worry about.
Q. Her left eye socket still seems bigger than the other. The Ophthalmologist noticed this. I thought you were dealing with that?
A. What do you mean by bigger? We did and she looks fine.
Q. What age does your skull normally fuse to become your adult skull?
A. Early teens normally.
Q. Would it ever re-fuse, the coronal suture, again now?
A. No, never heard of that.
Q. We were told by the Ophthalmologist that she doesn't have a squint. Is that the case?
A. If that's what they say, then she doesn't. That's good.
Q. Could that change? Could she develop a squint later?
A. No, that's never happened before.
Q. I've noticed she still has an asymmetry and her face still looks weird in a mirror. Wasn't the surgery supposed to correct that?
A. No. The surgery changes the skull, forehead & stops any further facial asymmetry as it grows but it won't correct what has already happened.
Q. She still has a few small bits of scab that look a bit green, is that ok?
A. Yes, they will just fall off when they're ready. Just keep it clean.
Q. How long do you continue to see kids for after surgery, until what age?
A. Normally about age 10.
Q. Is there anything we should do, or look out for going forward?
A. No.
Q. When do we see you again?
A. Next appointment in 2 years.
Q. What will that be like, like this, just a general catch-up/chat?! (I meant about any more procedures/tests)
A. Yes, just to see me.
So, all is at it should be from their point of view. For me, except me being able to notice the eye-socket and slight facial asymmetry she's just perfect. She always seemed perfect to me anyway. I feel that we're done. This is really now behind us and the surgery already seems like a distant memory.
I've had contact from a few people going through this and I really hope this blog and the detail helps them/you. Do feel free to contact me if you want to ask any other questions about emotions, swelling, bruising, post-op recovery or see more of our (pretty traumatic) post-surgery photos to prepare.
I don't suppose I'll be posting here ever again! Maybe I will in 2 years after our next appointment, if Blogger still exists!
Here's a last few photos. Before, during & after.
 |
| Kate, April 2013 |
 |
| Day 2 (I think) post surgery - 19 April 2013 |
 |
| Kate, July 2013 |
Wendy Ager
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