This morning my friend Hayley, who writes Downs Side Up sent me a link to the blog post she wrote in regards to the press release that new antenatal screening is being introduced for Down’s syndrome, Edward’s syndrome and Patau’s Syndrome. Please take the time to read her post if you can, explore her blog and learn some more about her lovely daughter, Natty, who has Down’s syndrome (as well as being an all round awesome kid, part time model and terrible singer).
Since reading about the new tests I’ve read some of my own posts about my experience of getting a diagnosis of Edward’s Syndrome. I had a daughter, we called her Maple, she never made it beyond 14 weeks of pregnancy because we were told she was “incompatible with life”. Whenever I think of Maple these words pop into my head and I wonder if they were right. Deep down I know they probably were right, but it doesn’t make it any easier, it doesn’t make me wish I had my daughter here with me any less. She would have been 3 this year and it’s no easier. I probably think about her less often, but when I do it still hits me like a ton of bricks. I have still spent this morning sobbing for the loss of my little girl. My daughter, the only one I had.
I try and think about how things could have been different. We couldn’t have done anything to prevent her condition, but how things were handled. Could we have given her the chance of life? Having held her in my hands, she so so tiny, she had perfect hands and feet and the sweetest little face. However most of her internal organs were outside of her body (by that stage they should have been inside) and her head wasn’t fully formed. I doubt she would have survived birth, but who knows? Children with Edward’s syndrome amaze us every day.
After 3 years I realise what I would change. I would have asked for time. Time to think, time to research, time to decide. We were so rushed. There was no time to stop and think, to process, to fully comprehend our decision. We were told some people liked to wait until 24 weeks, until their babies were considered viable so that they would be acknowledged by the state. So they have a birth certificate. To me that didn’t make her any more real, valued, or important. I couldn’t have carried on with a pregnancy knowing their was a death sentence hanging over our baby. We were told she was “incompatible with life” and I believed them. They were probably right, they were almost certainly right, it doesn’t make it any easier. She didn’t need to reach 24 weeks to make her our daughter.
Sorry, I was talking about time. My brain ends up all over the place when I think about all this. I would change how fast things moved. We were told the news, offered an amnio (which we accepted as the decision to have a termination had already been made) and I went in to have the first tablet that starts a miscarriage before we got the results of the amnio. If I could go back that is what I would change. I would wait for the results, then I would go away and research the condition, ask lots of questions of our doctor and I would give myself a little more time. I feel like parents are rushed to make a decision, it’s almost like they don’t want you to have the time to think about it, to waiver, to get over your initial shock. To question what “incompatible with life” means. Even a day or two would have made a difference.
What of screening for Down’s syndrome? Do parents fully understand the decision they are making? How many parents have actually met a child with Down’s syndrome? Less and less I imagine, as a society we are deciding these children’s lives are worth less than a child without Down’s syndrome, so there are fewer children with the condition. The thought of having a child with a disability can be a scary one, I know, I then went on to have Arthur who has ACC. We were advised to terminate his life, that we could do that up until birth, that his life was so worthless they would let me give birth and they would offer no life support should we choose. I shudder at the thought.
I don’t think there’s anything wrong with screening. I do think there’s something wrong with rushing parents to make a decision quickly. I think there’s something wrong with not educating people properly about conditions such as Down’s syndrome and therefore us not valuing these lives. I whole heartedly believe women should have choice, but more than that I feel it should be fully informed choice. No one can make an informed choice from a point of ignorance.