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...
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.
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.