Thursday, 13 July 2017

Cleft lip and palate diagnosis

I wrote this in May of 2008 after the scan showed Jake (unnamed at the time) would be born with a cleft lip and possibly a cleft palate. I'm reposting it so it's the first post on the blog after all these years. Most people turn up here after receiving the same news and they probably want to read about what their baby is going to be like and not my happy and confident 8 year old.

So if you have arrived following a recent diagnosis, take my word for it that it's going to be okay OR, read the first post below and then follow the archive and read through our journey from diagnosis to surgery and beyond.

James

"The last 24 hours has been a shock! My head is going at a million miles an hour and I don't really know where I am. This blog seems like a good idea.

Last September my wife had a miscarriage so at our three month scan we were obviously paranoid and expecting the worst; although we have an amazing set of family and friends, good jobs and a wonderful home, the events of the previous year had seem to conspire against us somewhat and although we try to make sure the glass is always half full, sometimes it's not that easy.

Anyway the scan went well, all looked normal and the sigh of relief was universal; things were slowly going for the better. Naturally, then, we walked up to the maternity unit at Royal Surrey with something of a swagger presuming that this would be routine and all would be well. Actually that's a lie, we did say a prayer the night before but assumed the same God would be listening!

Anyway the scan was going well, with the sonographer changing the 'not normal' buttons to 'normal' by right-clicking and progressing through the list. Clare finally asked 'So is everything O.K then?' to which the lady replied;

'Well...not everything'.

You never know how you'll react to bad news but when I heard her response my whole body stiffened and a wave of heat passed over me. Clare's grip tightened and we braced ourselves. We were told that our baby would be born with a cleft lip and probably a cleft palate. I say probably as a scan can't tell the true extent of a cleft lip, palate or what combination they come in, if at all.

The lady explained that, as bad news goes, this was pretty good. Apparently of all the things that could come up a cleft, regardless of size, type, seriousness etc is the one you want. It didn't feel like that at the time and whilst I'm relieved it's not more serious, I'm having difficulty giving small mercies any thanks.

I've only fainted once, when I had blood taken the time before last (I was lying down at the time, pathetic I know!) but I felt that without water and removing my jacket this would be the second time. I've always found it weird how the sight of blood or hearing bad news could provoke such strong physical reactions but I managed not to faint and we were ushered from the scan room to a cosy room which is obviously used for much worse news than ours.

Clare said 'I don't want to the people who come into this room' and we all knew what she meant. The symbology of the soft furnishings amongst the stark NHS decor and stop smoking posters was deafening in its silence. I was trying to stay as practical and blokish as possible as Clare and her mum sniffed through their tears while waiting for the next nurse.

I felt like a bit of a statistic as we were waiting. I really hope I never have to be in the comfortable room again in my life.

And so the reading began.

We started by looking through the paperwork the nurse gave us which explained everything we were going through and what to expect and also had a piece written by a mother who'd gone through it all and how we shouldn't worry too much. A before and after shot offered little comfort as even though the after was a miracle of science, up until that point we were going to have a 'perfect' baby which was going to be head boy / girl, happy, rich, famous and would probably do a lot of work for charity.

People with illnesses or disabilities gravitate towards the web and whilst this must be a pain for doctors who regularly have to deal with the self-diagnosed dying patient with a cold, it was of great comfort in the first few hours.

www.clapa.com is the official site of the official body and is probably the best place to start. It explains the procedures, time scales and has, more importantly, loads of before and afters. What I noticed (other than the obvious) was that the before shots were just as happy as the afters. It's important to know that the baby doesn't suffer as a result of having the cleft, it's not sore, nothing's missing, just that bits of its palate, lip, nose, gum etc have not quite grown together or have grown in a slightly different direction. IT CAN ALL BE SORTED. And the first op is at three months old....this is one which makes the baby's face look much more normal. Whatever 'normal' is. I'm not sure I'm normal!

So, we made a few important calls to key people who could spread the word. Explaining the same scenario hundreds of times is not we needed last night but we do want everyone to know so they don't feel uncomfortable later on. This worked well. The calls and texts started soon after and we explained it a few more times but in the main I would recommend using friends and family to do some of the hard work at least to start with.

I'm a typical bloke and I can fix everything but I can't fix this. Not yet, at least. Clare's mum was upset, as she to, cannot fix it. Clare's upset for the same reason but it's always harder on the woman; she thinks it's her fault, which of course it isn't. It's no one's fault, there's nothing which could or should have been done to avoid it. If there was, believe me Clare would have done it as she is the model expectant mum. It's one of those 1 in 600 things and we're number 600. Or 1 depending on how you look at it.

Anyway we flaked out around ten and woke up to reassess the situation. One thing is for sure and that's that the next 4 months until the baby arrives are going to be a series of peaks and troughs. I went to bed upbeat (2 beers / half a bottle wine) and Clare was teary whereas I woke up feeling blue and Clare was o.k. It changes throughout the day an we're not yet 24 hours into 'the news'. The one thing I can't get out of my head is this. We know time is a great healer but it's difficult to get used to something which hasn't happened yet and this situation is going to rule the next 4 months. I feel a bit cheated that our outlook on the whole situation has changed.

The specialist came at 10am this morning which is pretty impressive. In fact she knocked on the door at 10 seconds past ten, although my watch is fast. Anyway the NHS machine has kicked in and we went through a LOT with her and I'm going to write more on that tomorrow. But we feel a million times better having seen Ann(e), our angel, than we felt yesterday.

We're going to see Indiana Jones tonight for distraction and I'm going paintballing for a stag do in the morning and you can probably guess how much I'm looking forward to that."

Now go back to May 2008 in the archive and keep reading. Good luck, it's going to be fine. JF

Friday, 30 June 2017

Post op photo update

The op was generally a success. Piet was a little disappointed with the lip revision when we went for the check up but the gum repair went perfectly. Perhaps Jake will want more surgery in his teens if it's not to his liking but that'll be his choice; unless there are any medical reasons for more surgery, it's all up to him from now on. Apart from a couple of comments (that we know about) his lip/ nose hasn't caused him any bother. Throw into that mix his hearing aids and braces, I'd say it's a case of 'so far, so good'. I'm not naive to think kids won't say nasty things once he gets into the dreaded social media years (and they are really just around the corner) BUT the school is good around bullying and inclusivity that it ought to be spotted and dealt with. He's a happy, confident and popular boy and I hope that will stand him in good stead when kids start getting shittier to one another. I suffered the odd bit of bullying at school and although I'm not the most confident person, I can't say there's any long term damage.

Anyway, here are a few recent photos.








Monday, 14 November 2016

Cleft gum repair

Today's the day of the bone graft/ gum repair. Feels like a long time coming; since the flurry of activity on this blog in the beginning, life has just become life and cleft stuff doesn't really feature. But I do remember thinking about the nice long break between the palate op and the one Piet Haers is about to start in about an hour from now. That's just under 8 years which has passed in approximately four and a half minutes and here we are back in the same ward of the amazing Lady Evelina hospital waiting for hopefully the last major operation of Jake's cleft journey.

The surgeon will make an inch long incisions into his left hip and borrow a bit to put into the gap he left (on purpose) back in 2009. This will fuse with the rest of the gum and give him a strong foundation for his teeth which are slowly getting straighter and straighter via the brace. I'd imagine that'll come off within the not too distant future.

It's different this time as we're perhaps a little less worried and Jake is more worried; well, he wasn't at all worried last time on account of his being nine months old and had no idea what day it was let alone that he was having major surgery. Less worried is maybe not the right expression and perhaps more experienced is how we feel compared to last time. Jake's main concern is the lack of football for six weeks after the operation and he's been typically cool about the whole thing apart from understable concerns over any pain he'll have. When he wakes up he'll have a morphine button to self medicate through the night and then should be ready to come home tomorrow tea time.

I'll post some photos later.

Thursday, 1 September 2016

Cleft lip photos

Here's a timeline of what to expect from baby to (nearly) 8 years old.

baby





24 hrs post op



3 yrs old


5 yrs old


7 yrs old





nearly 8


What to do after you get 'the news'

Hi new visitors. If you're here, it's quite possibly because you just googled 'cleft lip blog'. Just like I did a little over 8 years ago. I didn't get much so I started this blog. In the first 4 or 5 years after starting the blog I had loads of emails from people who went through the same journey of discovery.

Recently I realised it's been a while since I've had any emails. Firstly I checked my settings and then my spam and still nothing. I think it's because it's difficult when you land on a page about me riding a bike in Wales to realise there's a few hundred thousand words earlier in the blog which may be more relevant to your google search!

So, if you've had a recent diagnosis of a cleft or your baby was recently born with one, here's what to do:

1. don't panic (easy for me to say I know, but trust me please)
2. believe me when I say everything is going to be fine (ditto above)
3. visit the post I wrote about receiving the news about a 'cleft lip and palate diagnosis'
4. visit the post I wrote about the 'cleft lip repair operation'

I've also seen that lots of the original photos I found on the internet are now missing from the early blog posts so I will post some more before and after photos again soon which should hopefully reassure you that your babies and children will be absolutely fine.

If you want any advice at all, please drop me an email.

Good luck

James