FINAL POST - Discharged, finally, October 2022

We attended a GOSH outpatient appointment a week before her 11th Birthday in October and they agreed Kate could be discharged- see extract of the letter below.  Today I advised Ophthalmology Department at St Helier as they'd sent and appointment for Kate in December so they will also discharge her now.

If anyone is still reading or finds this in the future and wants to ask any questions please do not hesitate to contact me, 

Wendy

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CRANIOPLASTY USING BONE GRAFT

17/04/2013

 

It was a pleasure to meet Kate in clinic today with her mother. Kate had a Fronto-orbital remodelling procedure at aged 15 months, we last saw her in clinic 2 years ago. Since then she has been doing very well and getting involved in many sports including acrobatics.

 

She has no issues with her head shape and the scar has continued to not cause any issues. She did ask about making the scar smaller in the future, however we discussed that the scar is already quite narrow and wouldn't be a candidate for a revision as it may make it worse.

 

She is growing and developing well, not suffering with any headaches and her eye checks have all been normal.

 

I am very happy to discharge Kate from clinic today, however if she or her family have any questions or concerns in the future, then please do get in touch.

 

Checkup at GOSH Feb 2018

We saw Justine O'Hara (Consultant Plastic & Craniofacial Surgeon) again on Thurs 8 Feb 2018, who we saw on our last visit to GOSH.

Kate is in Year 1 at school and aged 6.  She lost her two front teeth before Christmas and has two others missing at the bottom at the moment as well!  

She was excited to be being picked up early from school to go to the appointment at 'Hospital in London'.  She doesn't seem to remember the last visit at all and it was like it was all new to her.  Whereas for me, the thought of it and the journey, though we went a slightly different route as we don't need a pram now, so can use the tube, was familiar and odd emotionally.  Especially so, as we neared the hospital.  A feeling of uncomfortable familiarity is how I'd describe it, though once inside the friendliness of it and seeing it all the same, the waiting rooms, play areas etc put me at ease and the horrible feeling subsided. 

Our appointment was in exactly the same room as last time, and the day she was diagnosed... and I found out she didn't have a 'nothing' wrong, but that she had a serious condition that needed major surgery.

As expected as the waiting room was full, we had a bit of a wait.  I thank my lucky stars.  It put things in perspective when you see others in there with much worse conditions, syndromes where craniosynostosis is a small part of their problems, and babies probably waiting for surgery or those with the stitches across their heads and I noticed an older girl (probably 8-10) who had quite noticeable asymmetry.  

A long hour and a half wait, but Kate didn't seem to mind. We played at a play table with various toys, lego, read some books, coloured and enjoyed some 121 time together.  

As expected also, the check-up was generally a chat, to check she has no problems, which she doesn't.  In fact, Kate is remarkably bright and healthy, and doing well at school.   We discussed slight asymmetry that is unnoticeable to most, including family.   I mentioned her scar, which is widening as her head grows and she said it could be camouflaged later if really necessary.  I doubt it will be.

They said she might only have one more appointment, for age 8 and then be discharged but I thought it was to age 12, and when she checked she said they'd revised discharge age again and it IS back to 12 so we probably will have 2 more visits to GOSH.

We were the last to leave the Cranio department, and the hospital seemed deserted.  Kate used to love these cars, so I let her have a quick spin in the now empty space before heading for some tea and home.  I left to get her from school at 2.30pm and we got home at something like 8pm.  All in all a 5 1/2 hour round trip!  

A copy letter came from the consultant, that goes to her Doctor locally and to Jane Leitch (Consultant we are under at Sutton/St Helier Eye Hospital) shortly after, that I've put with ALL the other paperwork/letters.

If you are on any similar journey, please don't hesitate to contact me with any questions, comments  or concerns WendyHutchings@gmail.com 

Reply from Genetics

Response to my email -

Thank you for getting in touch. Since meeting you at the craniofacial appointment, we have testing underway on Kate's DNA sample looking for the commonly known craniosynostosis genes. It can take a couple of months for all of these tests to come through. 

 

In the meantime, I will arrange for Kate to be referred to Dr LW, who is the genetics consultant that specialises in craniofacial patients. Once all the results are back we will write to you if we don't already have an appointment scheduled to see you. We will also arrange for your blood tests (if necessary) at that time.

 

Please feel free to get in touch if you have any further queries or concerns.

2 year Post Op appointment at GOSH

Those of you paying attention will have noticed I didn't post in August. That's because the 2 year post-op appointment was cancelled, and after much re-arranging, we ended up going on 29th October 2015.   We took big sister as it was half-term and Daddy also took the day off too.  We went to the British Museum to look at some of the Roman artifacts and meet up with Grandad who works there, & then headed to Great Ormond Street Hospital, via Coram Fields (play area) just the back of the hospital.

We were approached whilst waiting by the Clinical Genetics team for the first time. The lady explained that participation in the genetic study of craniosynososis should have been discussed around the time of surgery and if we were acceptable to it, she could have had bloods taken then, but somehow it didn't happen. So we discussed with her the options and participating.

We are keen to assist in the research to identify genetic causes and also perhaps give Kate reassurance if/when she wants to have kids of whether/how likely it might be for her to pass the condition on, so we agreed for her to give blood which was arranged there & then, and around our original appointment. They put on cream to numb the pain from the insertion which takes 30-40mins to work.  She was a star and made the most fuss about removing the plasters, and didn't feel them take blood even though I was holding her & we had an additional nurse distracting her with a book just in case!  

I think they might come to us depending on the results they get from her anyway, but just to be sure I am going to email the genetics lady as there are other factors from the parents that can affect the genetics, in case they want blood from us too.

At the 2 year post-op appointment we saw a lady this time who wasn't involved in Kate's pre-op or surgery.  She was happy with Kate's look and recovery though agreed that there is a slight skew in her face, that I still am aware of.  She advised that that there would be potential for reconstructive rhinoplasty (that's a nose job to most people!) to align her,  possibly around teenage years if she feels it necessary.   That was the first time that was mentioned.   It would not be classed as cosmetic due to her craniosynostosis, so considered as due to the craniosynostsis, a medical condition & covered on the NHS.

I asked if she had had the operation sooner, i.e. when she was younger, and therefore there had been less time for the asymmetry growth to continue, that this could have prevented this skew.   She said that they prefer to do coronal craniosynostosis cases between 15-18 months because if done earlier they tend not to work, and that cases where the surgery had been performed earlier in other countries, that they were having to re-do the surgery.  How awful!

She said they'll probably see Kate next when she is 6 - so 2 years time.

We were also asked to go to Clinical Photography for post-op photos and agreed for photos being made available for teaching of healthcare professionals & medical records.  Kate was an absolute star, doing exactly as instructed for the angles of photos they wanted to get.

Kate turned four a couple of weeks before the appointment and is as bright and cheery as ever.   She now understands that she had a big operation on her head in the hospital in London, though no actual recollection of it, of course.

Luckily, most of her memory of experiences at hospital have been good and we always keep up-beat about going there, so she almost looks forward to it!   On returning home I found we had received her next eye appointment date for February locally.  I expect we will see the consultant as well then, as have the normal eye-testing.

Kate started a new nursery in September and has settled in well.  This pic is a recent one I like of her after filling the party bags and wrapping pass the parcel for her 4th Birthday party.

Next update will be after Feb 2016 eye appointment.

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.