Thursday 29 May 2008

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.



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