There is nothing that can prepare you for having a child with a disability and there is nothing that can prepare you for having a child with CDKL5
Tuesday, 1 November 2011
Where it began
Well I am Carol-Anne, and mum to Nathan 15, Cameron 13 and Little Amber, our special child aged 6. I am married to Adrian, my second husband, but my soul mate, and the love of my life beyond doubt.
Amber was diagnosed with CDKL5 in March of 2009, but it was a long road getting there, but we did get there in the end......... I wouldn’t say I had a easy pregnancy with Amber compared to the boys because it wasn’t, and from day one there was something in the back of my mind telling me all was not right, not least the fact as 28 weeks and feeling pretty grotty I was admitted to hospital where not only did they discover that my baby was Pink (a girl) but was likely to be big, I also had excess fluid around the baby which is called Polyhydraminous. Being diagnosed with polyhydraminous at 28 weeks gestation was what I now know the beginning of the journey, a journey that at times has been unbearable, but a journey that I had to follow so that I would become the person I am today, not perfect, but different from what I once was.
Amber was born on the 22nd April 2005 by elective caesarean, this was because the sonographer couldn’t estimate her weight, only to say beyond ten pound, and having already had my first child that had got stuck coming out (shoulder dystotia) I wasnt going down that route again. Well Amber was big, but only 9lb 12ouzes slightly smaller than Nathan my other big bubba, but she was long, at 55cm. When I reflect on those early days now, I know there were signs, she was very floppy and soon after birth used to make a deep gulping noise, but as I never saw her do it, I put it down to just one of those things! She was beautiful, huge, and pink, just gorgeous, I know every mum says that there baby’s are the best they have ever seen, I said it about my two boys too but she was a BIG beautiful girl, and very very lovely.
We stayed in the hospital for around 4 days which is the norm after a caesarean, and fairly soon, there were even more doubt in my mind that something wasn’t quite right. I think the first was the fact that she would sleep 23 hours a day, she dropped alot of weight, didn’t feed well, we spent an absolute fortune on bottles and teats trying to find something that she could tolerate, she couldn’t tolerate the milk either with colic at 3 weeks that was so horrendous that we sought the services of a Cranial Osteopath, which did seem to help with also the change of the formula to Soya, and although she didn’t have the runny poo on Soya, the daily ounzes intake didn’t increase at all so the weight gain was slow very slow. In all this, there was a voice in my head telling me that all was definitely not OK.
One morning, Adrian was working from home and I was in the usual position with Amber a child that was by this time pretty nocturnal!!! In bed, she was 12 weeks, and her arms and legs raised and lowered very slowly and rhythmically, that was the day she had her first clinical seizures, the day that when I took her to the doctors. It was also the day I first heard the words "I am sorry there is nothing we can do for you here, you need to get her to the hospital as soon as possible".This wasn’t going to be the last time that I would hear those words........In fact I have heard them so many times over the last 6 that you wouldnt believe.......