A cleft lip and palate...what now?! Our journey from diagnosis to surgery and beyond
A blog about our son Jake, born in 2008 with a cleft lip and palate. I started it the day after the cleft was diagnosed and continue to write for people who turn up here every day after getting the same news. A cleft lip and palate is not the end of the world. Start at the first post and then read on...
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.
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.
...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.
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.
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.
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.