2 years post-op

Today is 2 years post Kate's operation for unilateral, coronal craniosynostotis at Great Ormond Street Hospital, London.   She had the op when she was 18 months old, after being diagnosed at about 13 months.  The incorrectly fused bone was 'undone' and her skull and eye socket remodelled.

Really, we've gone through the journey and a month or so after the operation felt we were out the other end of the main ordeal of it all. I feel that we now know Kate is, well, seems to us and medically to be completely ok and all the post-op appointments have instilled this belief for me.

But, it's not something that you can completely forget about.  For those of you who are going or are on the journey, then yes, after the initial recovery period, you can (kind of) forget about it.  If your op goes/has gone well and post op appointments and follow ups show no signs of problems.
The continuing appointments after are because they're just being cautious, in my opinion.

Obviously, eye-testing a baby or 18 month old isn't easy, and I can tell you it still isn't at three and a half!  The last appointment was a few weeks back and we weren't sure if she really couldn't see with one eye or was 'playing games' with us.  She was messing about a bit.  Our next appointment is in September and she'll be almost 4 by then, so hopefully she'll play game.  Until now, all the eye appointments haven't showed any issues and the consultant was pretty sure if there was going to be a problem, it would have been detected by now.

Day to day, after the op, as things got back to normal I've stopped 'thinking' about it and the times I do think about it obviously have become less and less.  As our eye hospital appointments have got further apart it becomes less of a 'thing' in my mind too.  But, the scar is a constant reminder.  Sometimes when I tie her hair up I really notice it.  Sometimes when I don't tie her hair up and the wind blows it a certain way, it parts at the scar, revealing it.

Post-op - scar 2014 (looks the same now really)

I'm not sure how much other people notice it, but I do. I also notice the slight skew in her face and difference in eye-sockets still, especially in some photos and in the mirror, but 'us humans' don't have symmetrical faces I really don't think other people do.

Photo pre-op when she was about 13 months

Recent photo from 2015

I remember how we warned people about the scar, that she would have a bit of hair missing right over her head and possibly be able to see the scab/scar and stitches after the operation. But actually that was so thin post-op that most people didn't notice it at all, as it was hidden by her hair and especially as the swelling and bruised eyes were so bad- THAT is what everyone noticed and couldn't help commenting on!

Post-op scar & stitches 2013

Post-op swelling & bruising 2013

Anyway, the point of the up-date is to just let you know what a gorgeous, happy girl Kate is and that everything is good and she is a wonderful, cheery and bright three year old.  If you're going through this and want to know anything, then please feel free to contact me to ask any kinds of questions.

Kate's 2 year post-op appointment at Great Ormond Street isn't actually until August 2015, so I'll post again then.

This is us today... we had a lovely day at singing class and met with friends for lunch and a play-date before collecting her big sister from school.  I checked with her before bed and she remembers nothing of the operation or the swollen eyes or anything at all.

Eye appt + Consultant

Yesterday we went to Sutton Eye Hospital for a check- up. Kate is now 2 1/2 and it's over a year since her operation (frontal orbital remodelling) at GOSH for simple unilateral left coronal craniosynostosis. 

Again, Kate wouldn't let the opthalmologist patch her eye but they (we had a student/ trainee in as well) were successful with glasses that have blacked-out one side, then another pair with the other.  

After the prism test, the lady mentioned to the trainee a slight exphoria (tendency of one eye to deviate outward) but that it recovered it very quickly.  

Kate seemed to be slightly faster to see the long-distant pictures quicker with HER left eye than the other and they said the consultant would look into that after she'd had the drops.  The rest of the tests I've assumed we're within a normal range & not commented on. 

I wasn't sure how she'd be with having drops at this age & couldn't remember the last time they did that, must have been 6 mths ago or longer. Anyway, she wasn't too bad & the consultant said she couldn't see any reason for the slight difference between eyes. Her focus appears to be the same in both eyes. 

I asked about the likelihood of future problems with Cranio cases, and she said that any eye problems would normally have presented themselves by now. I pushed for more and she just said that on a scale of 1 to 10 Kate's a 1 on her level of concern. 

They'll still keep checking though. Next appt is in 4 months, Sept 2014, and they'll do the other eye either with patching or glasses first next time. I think to see if she just 'appeared' to see the pictures faster with the second eye because she knew what they were and had seen then before. 

So, all this is all good from my point of view. Still no sign of any eye problems. 

Here's a recent photo of the girls, now 6 and 2 1/2. 

Any questions from you, especially if you're following because you're on a similar journey, please do just get in touch.  Wendy 

Letter above dated 29th May 2014

A year on...

It's a year ago since Kate's operation & it's only the date that is a reminder. 

You wouldn't know, although today Kate asked for a pony tail & I can easily see her scar when her hair is up at the moment.  I can see the slight assymetry in her face but she's a darling & most people say they don't or can't see it. 

We had a lovely day out today as it was a warm day & Daddy and sister are off work/school for Easter.  

Our next eye hospital appoiment (we go every 3 months) is with the Consultant in May. 

Letter from eye hospital to GOSH

Just received this week a copy of a letter from the consultant at the eye hospital to Dr Britto, the consultant & one of Kate's surgeons at Great Ormond Street. 

We have appointments for Feb and May with the eye hospital through already. 

Eye Appointment, 2 year check & general update

Recap

Kate was born 13 Oct 2011 and after quite a few appointments with various people she was diagnosed in Nov 2012 at Great Ormond Street Hospital (GOSH), London with left unicoronal craniosynostosis - premature fusion of the coronal suture of a skull bone - and had the required fronto orbital remodelling surgery to correct this condition at GOSH on 17th April 2013.  She was 18 months old.  The surgery was basically taking the skull apart right across the top of her head (ear to ear) and undoing the fused bone and reshaping her forehead and eye socket/s.  The surgery was about 4 hours and we were in GOSH for 5 long days for recovery.


I wanted to share these pictures, especially for those parents/carers following this blog who are/will be/have gone through something similar.  Though we were amazed at the tiny incision and distinct lack of hair removal across her skull after the surgery, this has widened as she has grown and is becoming actually more apparent, though her hair is also growing and thickening.

Also, I wanted parents to be aware, that she still had large bits of scab still attached until November and a couple of smaller bits have only just come off - 7/8 months post-surgery!

Eye Appointment

In December 2013 Kate had appointment at the local eye Hospital in Sutton for the eye check with optometrist and with the Consultant, the one who originally referred us to GOSH way back in 2012.

This time, as her speech has developed a lot (she was 2 in October) she was able to do even more tests - naming pictures & pointing out holograms etc with the Optometrist.  She totally refused to do any kind of patching, to test her individual eyes though.  

I showed the letter from the surgeon from GOSH who had said that although it had been reported by me that a squint had been ruled out, that this really should be confirmed as most cases of unicoronal craniosynostosis have some excycloroation of the globe (rotation of eye/socket).  The optometrist talked to me about this and said that Kate's very slight and not at all worrying (in fact her own is worse and not corrected at al) tendency is for one of her eyes to drift outwards.  Most people don't have dead straight eyes, like most people don't have 20:20 vision, and that it is nothing to worry about.

Most pleasing was that she played ball with the consultant who, this time, was able to check all the parts at the back of the eye with her lights and weird head-gear!  She was unable to see anything last time and had a good look and confirmed that she was completely happy with what she had seen and that check-ups will continue because of her growth at 3 months for general tests and 6 months for both her and the ophthalmologists.   Again, I showed her the letter from GOSH about the squint issue and she reassured me that this seems to not be the case, that Kate doesn't have a squint and repeated what the other lady had said.  

We have appointments already through for February and May 2014 at the Eye Hospital (Sutton, Surrey).



Normal 2 year check

I also got a letter to have Kate's normal 2 year check in December.   When we walked in Kate immediately took to playing and interacting with the toys laid out and, I got the impression, immediately ticked all the boxes for the lady we saw as to her abilities!   I took all the consultant letters off the Red Book and realised that that meant the lady would be blissfully unaware of her surgery and condition.   There is NOTHING in her red baby record book about her craniosynostosis!   So I had to explain all of that to her.   She was amazed at the scar and surgery and had not heard of it before.

A New Year - 2014

Last night, whilst brushing Kate's teeth, I got that reminder.  Kate's face is still not totally straight and it's normally only then, when looking at her in the mirror I see it clearly.  Others don't notice and normally looking at her straight I don't either but it is there, the asymmetry.  Nikki, her older sister, has commented on it too when looking at her in a mirror.

Today is New Year's day 2014 and it's such a different new year for me.  Last year we didn't go out, I think I was feeling ill and Nikki had chickenpox!  I wrote my review of 2012 on my business blog.  I didn't mention Kate's condition in that as we were keeping it private at that time.   This year, I've spent the whole day recovering from our fun evening with friends, thanks to my Mum & Dad for babysitting and those good friends for their company, support and more over the last year.  I spent quite a lot of time with my girls on the sofa today and Nikki declared it a special hugging day.  What a lovely way to spend the first day of 2014.

If you have any questions at all, please don't hesitate to contact me directly in any way from my contact page.

Letter from GOSH

This is an extract from the consultant & surgeon dated 1 Aug sent to our local Doctor.  

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. 

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.

Kate, April 2013

Day 2 (I think) post surgery - 19 April 2013

Kate, July 2013

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