Cleft lip and palate photos

It's 13 years since I started this blog after our 20 week scan revealed that Jake would be born with a cleft lip and palate. The blog was a useful outlet for all my worries and concerns and writing it became a therapeutic way of exercising everything going through my head. I did a lot of research but I also mainly wrote from the heart. There were very few blogs back then and a google search for 'cleft lip and palate blog' always saw this blog in number one spot. Now it's nowhere! Mainly because I hardly ever update it AND all my recent photos aren't relevant to expectant mums and dads as Jake's nearly a teenager; they want to know what their baby is going to look like...13 years in the future is an unimageably long time.

So much has happened in 13 years and, honestly, Jake's lip and palate are so little of his life experience or who he is compared to what we thought they would be. He's luckily not experienced bullying, his last operation was 5 years ago and he's a bright, happy and totally 'normal' boy.

I'd love to be able to tell the 32 year old me that none of what I was worrying about would be a problem in the future but life's about going through stuff I suppose and it was a sort of necessary journey.

The next stage will be the teenage years where kids can be cruel and then there's girls; I'm sure he wants a girlfriend and he's a great looking boy but will a scar on his lip hold him back? The fact is I don't know but he'll cope one way or the other...I remember reading that kids born with cleft lips and palates are often more confident in their bodies and appearance than those born without any issue; I suppose they deal with differences early on and because younger kids aren't as nasty as older ones, they get accepted earlier. Also, we're lucky to live in a fairly nice area and whilst I'm sure it goes on, bullying is less of a thing than it used to be as it's much more prioritised these days.

Anyway, here's a few photos of Jake for reference of a (nearly) 13 year old kid born with a cleft lip and palate, including the last one taken with my wonderful dad, my hero, before he sadly left us last October.

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 and then follow the archive and read through our journey from diagnosis to surgery and beyond.

James

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.

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.

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

Wales Velothon

I recently completed the Wales Velothon, an 86 mile cycle event through the Brecon Beacons. The hills were not fun but I managed it in just over 7 hours.

At mile 30, it started to rain, biblically, and I wanted my mum. However I kept telling myself ‘it’s all for the kids, do it for the kids’. Amazingly it stopped raining after about 20 minutes and everything dried off before ‘The Tumble’, the first of two notorious climbs. It’s a 4 mile, 8% gradient zig zag up a picturesque hill. I managed the zig but got off and pushed half way up the zag; not as hard as cycling but still knackering!

Then it was a mixture of fast downhill, gentle downhill and doable uphill until, Caerphilly mountain. MOUNTAIN. As I arrived I saw half the people cycling and half pushing; considering this was the bottom of the mountain I felt a dismount coming on and ended up pushing all the way up.

As I got to the top, I heard ‘it’s now 12kms downhill to the finish line’ and felt a wave of euphoria. Imagine my surprise then when at the bottom of the first descent we turned left and saw yet another bloody hill! So, not all downhill but knowing it was nearly done and I’d actually manage it after doubling my previous longest ride just a week before was a great feeling. Me and my co-rider crossed the finish line with an awkward fistbump slash high five desperately trying not to crash.

In all we raised £1500 for Great Ormond Street and my work donated the enclosed £250 for Smile Train. Jake was born with a cleft lip 8 years ago and the NHS did an amazing job; to think that other kids around the world don’t get the same support is heart breaking especially when it’s such a simple issue to fix. Anyway, I’m happy to have done this and also that someone, somewhere will be the beneficiary. 

Knackered on The Tumble

7:02 - roughly twice as slow as the pros. Gotta start somewhere.

Jake at 7

As ever, it's been a while but quality beats quantity; could be this blog provides neither but the lack of posts is, hopefully, an indication for any new visitors with recently diagnosed clefts, that the news is not as bad as you might think.

2008 (from May) - 44 posts
2009 - 74 posts
2010 - 19 posts
2011 - 14 posts
2012 - 6 posts
2013 - 5 posts
2014 - 5 posts
2015 - 2 posts (inc this one)

...tells its own story I think. The first 18 months were busy on here for a few reasons: firstly we were going through the motions all new parents do when they have a cleft diagnosed: scans, specialist visits, operations, checkups etc and secondly I really enjoyed writing it all down and the feedback I was getting. I also had a lot more time, what with only one child and a baby at that. You really don't appreciate how much time you wasted until your a few years into having kids. Don't let that stop you wasting it though, doing nothing is hugely underrated.

In terms of cleft news and Jake's development, the first thing to report is that he's an exceptionally happy 7 year old who's into every sport he can get involved with, a maths genius (obvs), doing well in reading (hand writing is not great though) and seems to be loving life. He is aware of his cleft and when I asked him if others notice it he told me they do and sometimes ask him why he's got a scar and he said 'I tell them it's just my lip, I was born with a hole in it and had an operation to fix it and that's why there's a scar'. Nearly broke my heart! I'm sure he'll have to deal with an arsehole or two who are less inquisitive and more shithead-like in their enquiries but which kid won't have to deal with that? Jake will be ready for it; not like me when kids were balancing briefcases on each shoulder and taking the piss out of my big ears. Honestly, children can be such tossers.

His hearing isn't great and the glue ear is back. He is going to have to have a hearing aid for at least six months. Again he's totally unfazed and is looking forward to being able to turn down crying babies! I do hope it's just six months but what will be, will be.

The big op, which will take bone from his hip to be grafted onto his gum isn't going to be until next year now and while I'm know it'll be horrendous for us, I'm sure he'll take it in his stride and just be looking forward to the presents and time off school.

So, nothing's changed since the last post really but it's important to keep posting shots for anyone worried about the 'after' photos.

Any questions, feel free to get in touch.

Cheers

 

five years ago with the future wife

 

two months ago with the old man

More photos

Not much of an update, just to say that Jake's getting on well at school. Even after moving from his first school half way through reception, he's settled in well, made new mates and is obsessed with Minecraft and Match Attax football cards. Just like another other six year old boy. 

Some recent photos. 

Check up

A few weeks ago we took Jake back to St. Thomas' hospital for his grand check up.

The difference between a regular doctor or hospital appointment and one of these days is pretty big; as we had 7 people or groups of people to see there were obviously going to be periods of waiting but we never waited more than 5 minutes and there were some gaps between appointments when we didn't even get to sit down. Impressive.

Firstly we saw the speech guy, then the psychology team, next we saw the hearing specialist, then lunch then the orthodontist, then the research team and finally we saw them all together. There's not much to say other than he aced the lot and they were all very happy with his progress and see nothing to worry about. The update is really that Jake's teeth about a year ahead of schedule in terms of development; that's not a good or a bad thing, it's just a thing but it means that his bone graft op is potentially next year. NEXT YEAR! I can remember writing on here years ago about how we could forget about the next op as it was so far off in the future and all of sudden it's within sight. Whilst it won't be very nice for any of us, it needs to happen and will mark the next stage of Jake's transition from being born with a cleft to having no gaps left at all.

The thing about the day which was most impressive was that, after seeing all of the professionals separately, we then saw them immediately as a group. It was them showing us that this was a team who all know and communicate with each other because they're here for our son. They genuinely care about seeing a child through its development to ensure that the thing it was born with through no fault of its (or our) own affects it as little as possible. And that's why the NHS is so brilliant, especially when it comes to children. We really had nothing to say to them (other than 'thanks') as the cleft or repaired cleft just doesn't affect us; the day before last this post went viral on facebook showing a baby with a bilateral (both sides) cleft lip and it was posted by a proud aunty who was saying she didn't care what people said or thought but she was proud of her beautiful nephew. As you'd expect, given that most humans are good people, the empathy and support was all positive but some of the comments showed pictures of teenagers with clefts and how they were fine and had had good lives, and there was one which showed a kid (maybe 9 or 10 years old) in a Clapa tshirt at a Clapa event. Really, I don't get it. Let me clarify, they're obviously an excellent charity and if I ever get round to running a marathon, they'll be a beneficiary but these events serve several different purposes but one unintended I'm sure, will be to show all the kids that they're different from other kids. By definition, they're there because they were born with the one thing everyone says won't be a problem and yet we group them all together to show how it's not a problem. I'm prone to over thinking things and maybe they get together because the parents got into Clapa at the beginning and made friends but it's not for me. The other thing could be of course, that we've not encountered any of the psychology side yet; I'm told kids start making fun of each other based on differences to appearance around the age of eight so maybe this blog will report differently in two years' time.

For now, all I can tell you is that when I tuck Jake in at night, I tell him he's my best friend and he tells me I'm his and that's completely brilliant.

I tell Freddie that too and sometimes he says it back. We're working on it.

Monkey(s)

I feel a bit guilty that this blog is mainly about Jake as the reason I started it is so much less of an issue or even a thought these days. Plus there is another child; I do feel a bit sorry for Freddie as the second sibling because he never got the same amount of attention before he was born, there was less anticipation as we knew (as much as you ever can) that he'd be fine when he arrived. He's also had less of my time as he came along just as I was transitioning away from a local job and started commuter doom working for the man instead of myself. So the combination of job proximity, having to divide time, love & attention between two kids and not one as well as the lack of anything being the matter, has been something of a triple whammy. Obviously the innate love is the same but the patience, quality time and focus is definitely different for want of a better word.

Having been through Jake's operations along with the natural anxiety the first baby brings and the absolute and utter newness and life-turned-upsidedown-ness of your general situation, I suppose I thought number two would be a breeze. Clearly I was wrong as I've never been as tired, stressed or mentally worn out as I have in the last three years. No offence Fred, it's not your fault but the combination of moving from a couple with a kid to a full blown complete family of four with a cat and a fish. Freddie gets frustrated that he can't do everything his big brother can but when Jake was his age his only frame of reference was us the giants as opposed to someone only six inches taller and much more on his intellectual level (no offence Jake!). Anyway, he's getting there in between tantrums and the crying or shouting and zero ability to follow instruction which seems to last some days from wake to sleep.

But it all adds to these times when the days are long but the years are short. I can't believe where Jake's nearly six years have gone, in the same time from now he'll likely have an underage Facebook account and will be travelling to places on the train on his own but we'll be happy he's got his smartphone so we can stay in touch. We'll probably wish he was five again and Freddie was still watching Despicable Me 2 stark naked as he is while I write this. It's easy to wish their difficult years away so that meal times and holidays become more bareable but I'm sure we'll want them back.

With that I'm going to take the naked child swimming just as soon as I can persuade him to put on a pair of shorts.

Making Memories

I didn't do much with my dad growing up as he was busy building a business. We're great friends now and I know, on some levels he probably wishes he'd spent more time with me. If, for no other reason than it's quite fun hanging out with your kids! And particularly on days like yesterday, FA Cup final day.

I follow loads of Arsenal fans and bloggers on Twitter and so many of them talk about the magic of the FA Cup and trips down memory lane; going to Wembley with their dads and grandads or just watching it on telly. As football was never on growing up, I got into it late at the age of 16 and I only picked Arsenal to support in order to annoy my Liverpool supporting study mate. Since then, I've had some pretty good days supporting Arsenal, but not for the last nine years (as every journalist continually reminds us) since we last won the FA Cup, beating Man U on penalties...I remember taking a portable TV into the coffee shop I used to run and watching it with terrible reception sat on the floor as the cable wasn't long enough...anyway, yesterday I got the boys as excited as possible and we got our colours on, ate hotdogs on the sofa and watched in horror as Arsenal went two goals down in the first eight minutes! To Hull!!! In typical Arsenal fashion we did it the hard way and as overwhelming favourites, we'd turned up thinking we'd walk it...we eventually woke up and after extra time we won it 3-2.

Freddie might not remember it but Jake will absolutely look back on yesterday as the day he and his brother watched Arsenal win the FA Cup with their dad. You can't put a price on that.

Why I keep writing this blog...

I get lots of emails from people in the position we were 5 and half years ago but this one I wanted to share. (I do reply to them all by the way!).

Like us, they'll be fine and in time the anguish they're currently feeling will completely dissipate, but right now, they'll be going through all sorts of crazy emotions. Having been there I know it's not nice.

But as I said, they'll be fine. Good luck guys.

"Hello!,
You have no idea how much better you have made my husband and I feel!.. we just found out our baby boy will be born with a cleft lip and palate in our 21 week ultrasound and have been devastated. Looking up pictures and google we found your blog and you have given us hope that we can do this!. I cried so much reading your first post because it was as though I had written it myself! Thank you for writing your experience you have no idea how much you have helped us!"

5th Christmas

Crazy to think but that was Jake's fifth Christmas. And Freddie's 3rd. I recently went to my brother in law's 40th birthday and the guys got table gifts of grey wigs (as he is nearly completely grey) and as we all put them on, I remember thinking that we're all getting a lot older fast!

Christmas gets better and better as now both boys are excited and get what all the fuss is about...Jake's got to the 'more is more' stage of gift receiving and asking for more...something we tried to avoid but like screen time, squash and chocolate, there's a few things you let slide after a few years of being knackered into submission. Pick your battles they say.

Moving on, I subscribe to a free service which lets you store all of your digital photos ever taken for free in the cloud - (check out MyShoeBox) - anyway every day I get a 'this day in history' email which shows photos from this day 3 years ago and 8 years or some other random number...it's  brilliant way of looking at photos you'd almost certainly never see again unless you were really looking. Photos lost forever although stored safely and separately backed up, now popping up like magic.

Five years ago we were this very week planning to take Jake for his cleft lip repair - have another read about the big week.

Here's a couple of the last photos taken of his cleft lip.

And here's a few five years on!

Autumn

It's been a funny old autumn really. If I had to sum it up in a word that word would most likely be 'shit'.

One Monday morning after a night where my heart was beating so fast and so hard I thought I'd written my last blog post. Of course, I wasn't having a heart attack but the doctors told me I was in the right place. My normally spot-on blood pressure was through the roof and I wasn't hypochondrically dreaming about the palpitations, there were in fact, palpitations. Anyway the root cause of this was a combination of stress and anxiety.

If anyone ever asked me if I was stressed I don't think I'd say I was but that's how it works...it creeps up on you slowly. Commuting, working under pressure, balancing finances, childcare and life's daily traumas slowly tap, tap, tap away at us and if it's not managed, something has to give. None of this is exclusive to me, this is modern life, deal with it. Man up. It's true, but it needed dealing with and I didn't deal with it. The doctor earlier in the year told me I was the sort of soul who needed to proactively seek relaxation and persevere with it; just 'chilling out' wasn't a possibility in his opinion. I did download a hypnotherapy course and went to a hot yoga class (I know!) but alas it wasn't enough.

I spoke to my dad and he said he'd gone through a virtually identical period of time. Late thirties, young, energetic kids, financial pressures, chasing the dream, worrying about the Joneses and suddenly you're shaking like the proverbial defecating dog. Things are improving but it's a day by day process which involves trying, as the sign on my kitchen wall triumphantly advises, not to sweat the small stuff and a Yantra mat - a sort of medieval torture mat containing 8,821 plastic spikes which dig into your back and release the requisite endorphins for a decent kip.

And so at this time of year, we inevitably look towards the next and what it will bring. Firstly it'll arrive without a thirteen and whilst I'm not overly superstitious, I'm definitely placing some of the blame of feeling so rubbish on that number. I will be besting my one month off the booze achievement from this January and lasting until March 9th when I run the inaugural Surrey half marathon - the aim is also lose 20 pounds in an effort to run the 13.1 miles in under 2 hours...a feat I missed by 8 minutes in the Royal Parks half.

So, having indulged me for this long on a blog about my son and not my state of well being, I suppose I ought to mention Jake. All things cleft related seem okay but one of his gromits has fallen out and his hearing has got quite a lot worse. Well that's how it seems, it's amazing what he sometimes chooses to hear and chooses to ignore! Seems to be a hearing epidemic in Surrey as the next available appointment is in December...for a child's hearing? Dreadful from a normally brilliant local service.

He celebrated his fifth birthday on September 8th and the day after he started school. That means two things; firstly my first born seems to have grown up very fast and secondly, this blog is 5 and half years old. Seems mental to think about all the time that has passed since I started writing this at 4 in the morning the day after we had his cleft diagnosed. Along with all the intangible and wonderful a child brings and lives through over 5 years here's a quick list:

• 2 x cleft repair operations (1 lip, 1 palate)
• 3 x new jobs (me), 1 x new job (Mrs F)
• 1 x new kitchen, 1 x loft extension
• 1 x wall fallen over
• 3 x cars 
• 1 x gromit insertion operation
• 5 x holidays to Spain
• 1 x second child
• 1 x holiday to Lanzerote
• 2 x holidays to Italy

As Ferris so eloquently said 'Life moves pretty fast, if you don't stop and look around every now and then, you could miss it'.

Smile Pinki at Wimbledon

This is post is late. However due to the way cross rail ads work, it's still relevant. Sort of.
I work in Wimbledon and each summer I am forced to contend with a few extra commuters on my morning commute. By 'few' I mean thousands and by ''commuters' I mean tennis junkies. Combine a decent British summer with a successful run in the tournament by a Brit and the available air in the train carriage is exponentially decreased.

Andy, the Scot, is no more; Mr Murray firmly established his Britishness by winning Wimbledon a few weeks ago and he did it in straight sets against the world number 1. Fair play, sir (surely?).

Anyway, the point of all this is to say that for two weeks prior to and ever since (around 6 weeks at the time of writing), Wimbledon station has had a Smile Train takeover, in terms of advertising at least. Virtually every adshel, 48 and 96 sheet billboard have featured massive images of Pinki, the girl who inspired Smile Train to make a film which won an oscar (order your free copy).

Smile Train had been selected as the charity to perform the coin toss before the final and Pinki was the natural choice of coin tosser! She looks incredible; to think of the transformation from just a short few years ago where she'd endured six years of an unrepaired cleft lip and all that goes along with it. Since the repair, she's been all around the world helping Smile Train show to potential doners the immediate and sustained effect just a few quid a month can do.

I blogged previously about how I went to the 10 year anniversary where they told of the half a million cleft operations which had been performed for free in some of the poorest countries on earth...that was 4 years ago and they're currently up to 906,138 operations. The magic million is literally only months away.

Now you see it, now you don't

I've written a few times about when Jake's scar is more visible than others. It's normally when you see it in reverse like in the mirror or a selfie taken of him and me in a mirror. But then we all look different in reverse! 

I'm sure you can see some small difference in his lip if you don't know him but this is a photo that you almost certainly wouldn't look twice at from a cleft point if view. 

Just got back from a lovely trip back to Spain; ten days of shouting, swimming, sand castles and ice creams. Pretty much what any kid wants from their holiday. 

Since first having Jake, each time we go away we have the conversation about when we get 'our holidays back'. Clare and I used holidays before children for lying on a lounger and reading books. The only effort or exertion was the competition to see who could get the best tan and who could read the most books. Whilst we're not as brown as we used to be and we didn't read as much, holidays are definitely getting easier. 

Freddie is becoming more robust so can just about splash in the tide without drowning and Jake learnt to swim which is obviously a priority in being more able to relax on holiday. Of course it'll never be the same but really I don't want it to be the same, I want these trips to be the ones the boys remember and try to recreate when they are in our position as life inexorably cycles on. 

God bless Apple, by the way; genuinely the single best thing about an iPad is the effect it has on children on long journeys. Before kids we would judge lazy parenting by the amount of gadgets they used to give their children. Now we get it! Without wishing to be horrendously patronising, the best behaved kids are the ones belonging to non-parents!

So it was lovely but I'm also quite looking forward to going back to work. Another strange phenomenon about holidaying as a dad of two mental children!