Tuesday 22 July 2014

CLAPA and unexpected meetings

One of the best sources of information we were directed to during our Cleft research was the CLAPA website.
We quickly found out that we could qualify for a free 4d scan between 26-32 weeks to see the severity of the cleft. My husband was very keen to have the scan, I was not. I didn't want to go through another scan, didn't want that sinking feeling when they might identify something else.
 I spent some time looking at images of varying degrees of unilateral clefts before I went. I felt if I prepared for the worse, I could somehow protect myself.
The nearest clinic to us was 'Babyvision' in Shrewsbury, a fantastic clinic housed in a converted barn on the outskirts of the town. I'd been concerned about seed being in her usual 'bum up' position, so I crammed a Mars Bar down my throat whilst in the waiting room. Lo and behold there she was dancing away when the wand transmitted the image back to the screen. Stubborn as she is, she lay with her left cheek against my uterus (where the cleft is). I didn't see any of that though, because I couldn't believe how beautiful she was; she looked just like the hubbie in profile.
At first we didn't see the cleft and for one heart-stopping minute, I thought they had it wrong; that it wasn't there. She shifted a little better into view and we could see it, though it wasn't nearly as horrific as I had thought. I intend to post some pics when I can load them (techno wizard I am not) but it looked like her nose wasn't completely collapsed as you sometimes see and it was definitely just on the left side.
We spent some time watching her suck her thumb, pull up her eyelid and then, with perfect timing, stick two fingers up at us, as if telling us she would like to go back to sleep and not have people gawking at her anymore.
We got two free print outs in colour, a strip of black and white images and a video to go home with. We treasure these massively, as we had not had those lovely scan photos before. It was nice to finally have some to show family and friends too, although they felt more sorry for the fact she looked like her dad than anything!

The one thing people keep telling us is how 'common' a cleft diganosis is. I usually politely nod and agree, but inside I'm wondering where they all are. However, it was only from sharing our experiences that people would say to us, 'Oh, my niece has just been born with a bilateral cleft'... and so on.
About two weeks after our 4d scan my husband was in Pets at home, when he noticed a little boy with some faint scars above his lip. Being way braver than I could be, he approached the mother and explained our situation and asked if her son had also been born with a cleft. The mother was unbelievably supportive and gave him her phone number, chatted about their experiences and has since sent us photos and recommended groups we can join for support. We have been truly touched and encouraged by this and again has shown that support and friendship can come from the most unlikely places.

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