Rage, frustration and no-one to blame.

I suppose I am angry that there is no apparent 'culture' of carrying to term a sick baby in the UK. There is no encouragement from the medical establishment to keep a baby with abnormalities. The strength to do that has to come from within yourself , with or without the support and encouragement of your partner and family. But my family didn’t want me to have a life looking after a mentally and physically disabled child, who would turn into a mentally and physically disabled adult. And I felt powerless to keep him regardless of everyone’s views. I know this sounds horribly weak, and it is. I was weak.

It was around this time that the BBC’s Panorama programme was aired which showed adults with mental disabilities being abused by their carers. I couldn’t bring myself to ever watch the program; the headlines in the papers were enough. I didn’t want that fate for our child.

http://www.bbc.co.uk/news/uk-13611089

And there was another story about how a woman killed her own son, who had autism. Reading this, the old me would have thought ‘how can a mother do that do her own child,’ but now I saw it through different eyes. She wasn’t evil, just utterly at the end of ther rope looking after her severely disabled boy. As much as I wanted to romanticise things and think that maybe we’d cope ok, and that ‘god doesn’t give you what you can’t handle’ (I saw that written on lots of the US pro-life sites), the reality of it was that not everyone is able to cope. 

http://www.guardian.co.uk/uk/2011/may/09/mother-killed-autistic-son-trial

Staring down the barrel of a gun

We pretty much had a scan every week from then on. The ventricles did nothing but grow at each and every scan. Even at only the second scan, the week after, the ventricles were now 17mm, in the ‘severe’ zone.  

What had initially been, to our untrained eyes, a couple of barely-noticeable black lines, rapidly turned into a black mass obliterating the brain. Here's a link to a lady who found herself in a similar situation with her baby. Our scans pictures were very similar. http://sociallyinappropriatemom.blogspot.com/2011/10/expectations.html 


An MRI indicated that it was probably caused by acqueductal stenosis, where the tube allowing the drainage of the cerebrospinal fluid is blocked. We were told that once the fluid ran out of space in the head, the skull would start to expand and then his condition would be termed ‘hydrocephalus’.

I didn’t want an amniocentesis. I wanted to keep our baby whatever. But again I caved in and had the amnio. It proved negative, but from our last experience, I knew this was no reassurance.

Within weeks, it got to the stage when they said our baby, again a boy, would be severely disabled. We were told that if we kept him, he would have brain surgery within days or weeks of his birth to have a shunt (a drain) inserted into his head and connected to his abdomen to get rid of the excess fluid. This would not be a temporary drain, but something he’d have for the rest of his life.

We just couldn’t believe it we were in this situation again. We were utterly bewildered. I couldn’t bear the thought of ending a pregnancy again and was furious with myself for having agreed to these tests, because if you don’t know, then there’s nothing to be worried about, and no pressure to do ‘something about it.’

I just kept wondering how on earth could a person go through it again and not end up suicidal or in a psychiatric ward? It felt like we were staring down the barrel of a gun. Why were we going through this? Why are we being persecuted? I am not religious at all, but even I began to ask, ‘what god have we upset?.’

All I knew that I was going to get this baby over 24 weeks whatever. At least that way he would get a birth certificate, proof that he did exist and did matter, and I would qualify for maternity leave, because I thought if I was going to have a nervous breakdown, at least I could have it under the guise of a maternity leave with a year to try to sort myself out mentally.