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