We got referred to a paediatrician who saw Kate twice, referred us to opthalmologists & physio because her left eye is the issue, because it doesn't always close when sleeping. He diagnosed congenital Bell's palsy and discharged us. I found a great support group called Courage to Smile on Facebook & connected with people of all ages & those with children & babies with different palsys (paralysis of facial muscles) and learned a lot about their issues, both physically & emotionally. We opted to keep this diagnosis to ourselves as people didn't seem to notice. We were still under Opthalmology at a different hospital and physio at another centre at the time.
It was the head physio that I spoke to on the phone that thought the diagnosis was odd, and the Consultant Opthalmologist that agreed with me that Kate doesn't seem to have a problem with her muscles. The consultant Ophthalmologist referred us to a Cranio Facial specialist at Great Ormond Street Hospital because of her head-shape.
I went to the appointment on 8 November 2012, this was after Kate's 1st Birthday. I was expecting to be told that she had a mild case of plagiocephaly (that word just describes the odd head-shape) and that nothing needed to be done. Kate's odd head had been spotted by a mother of a baby who had had brachycephaly, so I'd talked to her and looked into the head-shape issue. I went without hubby, and was pretty shocked to be told that it was the 'condition' that caused plagiocephaly that is an issue and that it needs surgery. She has left-sided unicoronal craniosyostosis. I shed a tear on the way out, got the train home & told an un-convinced husband the news!
I've done lots of research since I found out what this is and not facial palsy as previously diagnosed. I never was convinced, hence getting referred to the cranio facial team at Great Ormond Street.
In a nutshell, this is what craniosynostosis is - premature fusion (joining) of the sutures (gaps) between the plates of the skull. They are only supposed to close/join when your head has finished growing to form your adult skull as one piece. Coronal is the one in Kate's head that has fused. Her's is left-sided, so the other side to this diagram.
I don't have any 'good' pictures that show Kate's headshape, eye or wonky face because I've deleted them all as I didn't like it showing. These show it a little: her nose goes off to the left, one cheek is fuller than the other, and her head is flattened above her left eyebrow and her left eye seems more open/wider (looking at her & the pics, on the right). These are the classic signs of coronal craniosynostosis.
On Thursday, 7th March 2013 I had geared myself up to talk about Kate having Surgery for unicoronal craniosynostosis at Great Ormond Street Hospital with our consultant and potential surgeon, Dr Britto. I was under the impression that this appointment would be to discuss the surgery and date of. I'll just call it craniosynostosis or cranio in future, because it's so much easier! The hospital, I will refer to as GOSH.
I happened to know, from a phone call about our cancelled January appointment, that that they had a pencilled-in date of 27th March 2013 for surgery, which isn't very long from now. I don't think I was supposed to know that, and felt it was looming without us really knowing enough or being ready.
This condition is not minor, but common to Dr Britto. He is a plastic and craniofacial consultant and surgeon. The operation involves 3 hours of surgery by Dr Britto and a neurosurgeon and a plastic surgeon remodelling her head and eye socket at GOSH. There is a pretty high probability of her requiring a blood transfusion and she will have to be in a high dependency unit for at least 24 hrs and need some further days in the hospital. She may not be able to open her eyes, due to swelling, for several hours (maybe day or days) after she comes round or as swelling develops. However, in the bigger scheme of things, she doesn't have this because of some serious syndrome associated with her craniosynostosis and is developing normally (rapidly if you ask us!). In nearly all cases (Dr Britto said only 1 case he's had where he and the family are not satisfied with the outcome cosmetically) and from what I see around the world in my investigations, this surgery has no real complications and often solves the problem completely.
However, the consultant seemed to think she may not have full coronal fusion and now wants a CT scan to see if it's just the part behind the eye-socket down to ear that has fused. This, in itself, is another delay, and procedure with sedation or general anaesthetic. It will still require surgery too even if it is the lesser part that is fused. That is now what we are waiting for next. An appointment for a CT Scan and I think Dr Britto needs us to say actually say YES to surgery. So, 27th March is not a date for us and Easter is back on!
I've still been researching and discussing the surgery with hubby since. I think we're pretty much resigned to the fact that the pros of surgery outweigh the cons. People who choose not to have it seem to end up having it later, and that's not so good, and she could get a squint. She still might, but it is almost inevitable without the surgery from what I've researched. If her head continues to grow miss-shappen it could cause pressure on the brain & eye problems bacause the eye socket isn't right & moves more out of alignment as they grow. I'm now finding there could be hearing issues too.
I was putting off telling anyone until we knew we had a surgery date and we knew exactly what was going to happen, but we felt we had to start telling our family now, and therefore, I felt it was time for me to start telling everyone. I also got so worked up about this appointment that I needed to relieve the pressure of keeping it all to myself! I WANTED to do this, as I was not ready to share this until now.
I've read many stories, articles, posts on forums and blogs from other parents going and have been through a craniosynostosis journey with a little one, but not so many in the UK or with coronal cranio synostosis, or at Kate's age, even though it's the second most common & normally affects girls. Most have been little babies. I thought doing this blog might help someone else too. I also know that a lot of Mums said it helped them to blog about it and to keep people up-dated with what is going on, rather than repeating yourself over and over to people or having to talk when you don't want to talk about it.
Life still goes on. Kate actually has a bug we think now, or the norovirus that has been pretty mucky dealing with over the last few days, though she's happy as larry as normal! Our 4 year old has had lots going on at school and her 5th Birthday 'Mary Poppins' Party in planning. Granny had to collect her from school as we had a 4pm appoitnment at GOSH and when we got home, we had a 20 mins turn-around and left them both to go out for the other Grandma's 60th Birthday!
All the while, I zone in & out of various degrees of worry. That is completely pointless, but I couldn't and probably can't help doing some more pretty heavy worrying about this. What is the point of Worry? is already up on my Get Better Coaching blog! Before the appointment yesterday I kept busy, popping out to chat about other things with girlfriends the night before and volunteering as normal at the children's centre in the morning. Dog poo on the school run still annoys me, and we can't wait for Spring because that mean's its Nikki's birthday!
I wrote this on Fri 8th March. No idea when I'll be ready to press PUBLISH!
I have a few people to tell personally first, including our immediate family, so it may be a few days. Oh, and in the meantime I've got the sick-bug!
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