More pics

I noticed a poster at Guildford train station highlighting the plight of babies born in Africa with clefts. The poster has pictures of 6 kids born with clefts and the headline reads,

'If you think it's difficult to look at, try living with it'

I totally understand the reason behing the poster, it's intially intended to shock and then shame passers-by into making a donation. However I bet the artworker or account manager responsible for the ad doesn't have a kid born with a cleft! I found myself thinking 'Fuck you Mr. Ad man, my baby's going to be beautiful, how dare you etc, etc'.

The point is that babies born with a cleft are very different and yes, the first time to look, you will be shocked to a point. The you look again, then again, then you do a bit of research and eventually you see right past the cleft and then just as you're fully used to it, the baby has the cleft repaired and before you know it's a distant memory. I think I've written already that a lot of parents report back of being upset when they see their baby return from surgery. Although the birth defect has been corrected, their baby's face has been changed. In another context you can understand why they would be upset, but right now I can't see that. I'm sure I'll change but right now I just want a time machine which transports me to Summer 09 after the success of operation number 2. I am not the most patient of people.

When I read the book on fatherhood the writer wrote a chapter on 'competitive dad syndrome', the crux of which was about how we only see beauty and perfection in our own children, whilst everyone else's baby is a hideous monstrosity! I know that if our baby was born bright green with two heads, I'd love it but I'm still worried about the reaction of other people. That said, I walked down Guildford high street today and struggled to see an attractive adult; seriously most people are properly ugly in this town so I reckon that with Clare's looks and my, er, er, sense of humour (?) our kid should do just fine!

I've joined a group on Facebook for parents with or expecting babies with a cleft and thought it would be good to show some before and afters.

Jacob at 3 months

Looks alright to me!

A unilateral complete cleft lip

You wouldn't look twice

This boy was born with a particularly severe complete bilateral (both sides) cleft lip and palate.

Baby Pics

Here's a few pictures from the various scans we've had. The 3D ones are not very clear and there's loads of distortion, but the consultant managed to get a reasonable view of the cleft and area imediately above it. Where the nose looks deformed that's just more disortion unless our baby has the biggest nose of all time! Clefts don't actually affect the nose even though they look as though they do. The nose is actually always perfectly formed but where the lip line is broken the forces of the face splay one of the nostrils. When the lip is repaired the nose returns to normal. Clever eh?!

Here's the first scan. This was taken from the left which is why the cleft cannot be seen.

Here's a couple from the most recent 3D scan. The right side of this picture starts to distort at the nose but the cleft is pretty visible.

Chillin' like Dad!

Reflection

This has been the fastest I've known a week to pass in as long as I can remember. I can't believe it's been a week since the scan. Although it's probably been the hardest week of our lives and I'd like to think that that won't change, I'm happy to report that we're doing well. Especially now we've had the 3D scan.




We spent an hour with the cleft enthusiast as I call him and he's a Mr. not a Dr. which means he knows a thing or two. He was fully old school in a jet black and thick chalk pinstripe suit, the trousers being held up by comedy braces (which must have been a present from a child), striped shirt and non-matching tie. As soon as I saw how he was dressed I knew he was an expert. Only the fully qualified can pull off such a look. Either they don't care for fashion or this uniform is earned over a lifetime of study like how a soldier earns his stripes. I suspect the former is true but I like to think it's the latter. Anyway it gave me enormous faith in what he did and said.



He explained everything which we had heard already but went into much more detail about the various potential associated issues which can be included with a baby's cleft. They include various brain and heart related complications which are all very rare and none of them good news. I felt the same faint feeling all the way through the scan whilst Clare was cucumber-like. The 3D bit was not as successful as we'd have liked but there were two pics which I'll post here later which clearly show the cleft and it was good to get an idea of how it will be. The second picture is of the baby lying back (chilling) with its arm behind its head which is exactly how I sleep. I know because Clare wakes herself up by headbutting my elbow most nights! It's definitely my son. Or daughter. I'm not sure but I reckon it's a boy. We still don't know and don't want to. Couldn't care less either way, just want a healthy one.



This guy is amazing. The consultant not the baby. Well the baby too but anyway; the consultant left the NHS 2 years ago frustrated within the organisation which stiffled his research into his non-core duties, i.e clefts.....so he goes private and presumably makes a lot more money, yet he sees NHS patients and scans them on his very expensive equipment, gives them a dvd and large dollops of reassurance all for free. What a great bloke, it really restores my faith in the human spirit that I felt was beginning to wane. We'll definitely keep in touch and I'll send him some pictures after the baby is born. And a new tie perhaps.



It bugs me when people go on about how busy they are and how tough it is at work because they chose to do that type of job, it's definitely their fault. If you want an easy life then get an easy job; be a chilled out, worry free lifeguard on ten grand a year or work hard, push yourself, earn more and deal with being knackered at the end of the day. Anyway the point of all this is that hard physical or mental work makes you tired but emotional strain wears you out. The kind of strain which occupies your first and last thought of the day and most of the rest in between really takes its toll and I take my hat off to the people who have it far, far worse than we do.

Let's not forget that, whilst our situation is far from ideal, there are people out there, right now looking after severely mentally disabled relatives, coping with abuse or who are very sick themselves and that's not something that goes away after a couple of operations. There's a guy we know who's very sadly just lost his sister to Leukemia and it kind of makes me feel guilty to even be writing the blog but it has made me able to contextualise what we're going through. In the last week I've gone through the complete range of emotions. Jealousy, sadness, anger, relief, desperation and generally feeling sorry for myself but having done a shed load of research, talked until I'm hoarse and now been able to take stock, my overriding emotion is of gladness that it should all be alright. There's been a lot of people involved in the process from then to now and everyone's done their bit to help us out and we're really thankful that we have such excellent friends and family.

Here's some information on clefts and how they occur from the official website (http://www.clapa.com/)





What is Cleft Lip & Palate?



Cleft means 'split' or 'separation'. During early pregnancy separate areas of the face develop individually and then join together. If some parts do not join properly the result is a cleft, the type and severity of which can vary.



Cleft Lip



A cleft lip is a condition that creates an opening in the upper lip between the mouth and nose. It looks as though there is a split in the lip. It can range from a slight notch in the coloured portion of the lip to complete separation in one or both sides of the lip extending up and into the nose. A cleft on one side is called a unilateral cleft. If a cleft occurs on both sides it is called a bilateral cleft.



A cleft in the gum may occur in association with a cleft lip. This may range from a small notch in the gum to a complete division of the gum into separate parts.



Cleft Palate



A cleft palate occurs when the roof of the mouth has not joined completely. The back of the palate (towards the throat) is called the soft palate and the front (towards the mouth) is known as the hard palate. If you feel the inside of your mouth with your tonge, you will be able to notice the difference between the soft and the hard palate. A cleft palate can range from just an opening at the back of the soft palate to a nearly complete separation of the roof of the mouth (soft and hard palate).



Sometimes a baby with a cleft palate may have a small lower jaw (or mandible) and a few babies with this combination may have difficulties with breathing easily. This condition may be called Pierre Robin Sequence.



How does it happen?



The cause of clefts is not understood very well. Whilst we know what happens, we do not know why. Sometimes clefts run in families and sometimes a baby is born with a cleft without anyone else in the family having one.

Something different for a change

I think a spot of good news is in order. Our friends Paul and Kerrie had a beautiful bouncing baby girl last week and mother and baby are doing just fine. We've not been to see her yet but friends of ours have and report back sweet things. Paul is the model modern dad doing everything but the boob and loving it. This is the first girl in their family for something like 60 years so I'm sure granny is pleased to observe what a long overdue injection of oestrogen does to their testosterone fulled clan!

Have just returned from another checkup. Same hospital, different reason. I had an eye test last month before buying new glasses as Vision Express now take a 3D eye ball scan which revealed that two of the arteries going into my right eye (the one that can actually see) have no blood going through them. Given that I tend to suffer from hypochondria and am completely pathetic when it comes to anything to do with my own blood I went to see the doc the next day. The prognosis was aimed more at Vision Express and that they should stick to prescribing glasses than my actual eye but he referred me to Royal Surrey anyway.

The drops to dilate my pupils didn't work first time so they gave me a second dose to properly blind me. When the first guy went for a second opinion you can imagine my thought process. 'Brilliant, I'll be blind within the week, baby with a cleft, what next?!'

Second opinion man turned up and shone a light into my weeping eye and concurred that he didn't know what was happening either. This apparently happens to people in their seventies and neither of them had seen it in someone my age. The vision in that eye is virtually perfect with glasses so I must be getting blood from somewhere and they decided that they should take some pictures and see me in six months' time. It reminded me of the 'nurse' in our school sanitorium who sent a broken arm home with paracetamol. Anyway they don't seem worried so I'll forget it about for six months.

One of the presents Clare bought me for my birthday was a moleskin notebook of Van Gogh fame, which I'm using to make pre-blog notes and I have a few entries planned for slow news days. The one I'm working up to is on karma but I'll need to wait until I feel really shit to write it as it's a bit deep!

Had more really nice emails from some close friends who know who they are and today is defintely a good day. I'm beginning to feel a bit of a fraud as things return to normal. We're having a 3D scan on Thursday in Kent with a cleft enthusiast who does it free on the NHS (result) to help his research into the condition. I wouldn't ever consider this type of scan if nothing had come up on the last one as it kind of ruins the surprise but we're curious to see the extent of the cleft and this will give us a really clear picture of what's going on. It seems like we're going to meet our baby properly for the first time and we're a bit nervous!

Instant Bond

Clare says I get verbal diarrhoea whenever I start talking about our situation to anyone who cares to listen. It's true I suppose but I've always talked too much; it used to get me in trouble at school. I'm trying to get it all out which I suppose is why I'm writing this as well. On one hand the blog seems like a good idea but on the other it is a constant reminder of why I'm writing it. Distraction helps a lot but like with a bereavement or a break up, your mind wanders off but it always returns to the same place. Unlike a beareavement or break up though, where every day gets you further from the cause of what your mind returns to, every day for us gets us closer to it. That's weird isn't it. I feel guilty for writing it really but it's how I feel. The only person not affected by all this is our blissfully unaware beautiful little chickpea currently kicking and fidgeting in Clare's belly! It's important to remember that a baby with a cleft whatever feels no pain associated with the cleft, nothing's actually missing, it's just growing in the wrong direction.

Literally within the hour of our scan we felt a bond with our baby which I would reckon doesn't normally kick in until after the birth. I read a book given to me by my sister a few weeks ago which was written by a guy my age, 32, about his baby son's first year. It was a useful read although I found myself a bit freaked out after reading it and couldn't relate to the writer as he'd changed into one of those paranoid parents rushing his kid to A&E every time his boy caught a cold. I was convinced I'd be the calm, level headed practical one but now I'm not so sure. The news we got made everything so real, this is actually going to happen, a baby is on its way and cleft or not maybe I needed to realise that!

Our baby seems part of the family now, I can't believe women are still allowed to terminate at this stage of their pregnancy. I never really had a strong view on abortion until I felt the baby kick and wriggle to the point where you can see Clare's belly move. That was about 4 weeks ago when Clare was 19 weeks in and terminations can still happen up to 24 weeks. Last week a vote went against a new proposed law to shorten this to 20 weeks which seems insane as well as inhumane. I'm not really a soapbox person but this does seem like it needs addressing. I don't suppose I'll do anything about though.

As well as the bond between Chickpea and I and between Chickpea and the missus, my relationship with Clare has reached an adhesive peak and I reckon if you cut me right now her blood would come out. Talk about what doesn't kill you making you stronger, it's situations like this which can strain a relationship but it's done quite the reverse. Knowing that our baby is going to have some problems has turned us from a pregnant couple into a family overnight and there's an impenetrable forcefield around it. Don't mess with the Fernies!

We've had a good couple of days seeing both sets of expentant grandparents, taking them through the literature and subjecting them to my verbal diarrhoea. We cooked roast for 7 and spent some time in the pub yesterday and then spent today's wet bank holiday mooching and finished up by watching Walk the Line which we Sky plussed from last night. As fate would have it, the star is Joaquin Pheonix who was apparently born with a cleft lip and palate. He's a handsome devil isn't he?!

Work starts again tomorrow which will bring more welcome distraction and help me to settle back into normal life and I'm feeling pretty good about the week ahead.

Today, generally

Paintballing was a laugh. Just what I needed infact, complete distraction. I did find myself on a couple of occasions feeling a wave of sadness which is perhaps not the ideal emotion to experience as paintballs are fizzing past at 300 foot per second. The impacts brought me to my senses pretty quickly and I have some pretty funky bruises. I managed a 'hero' award for one of the games although it was ironic that it was the only game where I didn't hit anyone. I was pinned down with people shooting at me from three sides and I couldn't escape. I suspect not, but I wonder if there is some symbolism in that. More likely the Fosters kicking in!

Got home and called Clare. Then called her 3 times more as her f&*()^g iPhone, fantastic as it is as a wonderful piece of technology and advanced interface design, is actually shite as a phone. People slate Microsoft and regard Apple as the pinnacle of cutting edge cool but I'd take function over form any day.

Anyway I thought I'd review my mid night ramblings to see if any of it made sense and found a comment on the blog which did something funny to my eyes. The comment was from my mum, my wonderful mum. The comment itself was beautiful but what caused the irritation in my eyes was that I knew that she had signed up to a blogger.com account in order to make it. My mum is pretty advanced now in terms of computers and the web but she normally calls me to set stuff up and talk her though, but (and this is in no way meant to sound patronising) she did it all herself and she did it so I wouldn't know the comment was waiting and would find it in my own time and that means more than I can tell you.

Not long after I checked my work email account and found an email from my dad. My dad and me are close ('my Dad and I' - private joke) are close and we talk all the time but black and white does so much more and I had the same strange eye irritation. Amazing, heartfelt words. Reasonably embarrassing as Clare and her two mates were in the room. I took that as my cue to have a shower. I was pretty filthy to be fair.

Battery is at 10% and I should save my work, apparently. More tomorrow.

Before & After

Here's what our baby's cleft might be like. A complete right-sided unilateral cleft lip.


3 months old (1 week before surgery)

1 hour after surgery

All fixed

I can't wait to take photo like this one!

Peaks and troughs

4.30 am is a funny time of the day / night. I didn't think that the baby would have me up at this time before it was actually born! Once you're up though it's quite a nice time to be awake, I've always felt like I'm getting a headstart on everyone else and, if nothing else, it'll give me plenty of time to get ready for paintballing! Sleep deprivation was the one thing that worried most before we found out about the cleft(s) but now I realise how insignificant that's going to be in the grand scheme of things. It's always made me chuckle that even the toughest, hardened criminals get sleepy, even Phil Mitchell needs his sleep. The air at this time of the morning is lovely though, it has a different quality to it as if unpolluted by the day's activity. Also I can't believe how many cars I can hear on the road. Where is everyone going at this ungodly hour?

Yesterday afternoon we went back to Royal Surrey and had a second scan with another sonographer who was great and explained pretty much everything we'd already heard but she showed us in more detail on the scan. The cleft lip definitely goes through the gum but we won't know the extent of the cleft palate until the baby arrives. We do know that it's a right-sided complete unilateral cleft lip, not left-sided as the first lady reckoned. At the moment the cleft is 7.7mm and I love it to stay that size but it'll obviously get bigger. It's amazing what 24 hours does, I find myself looking at pictures of other peoples' kids, strangers' kids with clefts and I'm not wincing anymore, now I understand the condition. Ideally I'd like everyone I know (and everyone I don't but may come into contact with) to read up and do as much research so they're not shocked. I feel selfish that all I'm now really worried about is what other people with think, will they think our baby is a freak, will they stare and whisper, will I have to punch someone in the face? I'm sure that during the first few months there will certainly be some very tough times but I also know one look into our baby's eyes will put it right in a heartbeat. I think that the anticipation is likely to be much worse than the reality as we're only focussing on the negative right now and we seem to be forgetting that, despite the set back, we're having a gorgeous (natch) bundle of joy which is going to give us years of pleasure (and grief in all likelihood!).

We had a really nice evening, a few phone calls to various friends and family and yet more reassurance from the same website's gallery. We walked into town and had too much pizza, waddled home to watch Jonathan Ross and Clare fell asleep on the sofa; just like any normal Friday, but we went to sleep happy. As of now all is o.k with the world (apart from being awake at this ridiculous hour) and we're going to be fine.

Whirlwind

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.