Saturday, 31 May 2008

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!

Thursday, 29 May 2008


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 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 (

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.

Tuesday, 27 May 2008

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!

Monday, 26 May 2008

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.