Personal Story of Planning Addict
Throughout my life I have been a planner - I have tried every diary going, and when they have not been perfect I have made my own. When I found out I was expecting my first child it was no different. I read books, I planned everything, I knew what parenting techniques I wanted to use, what equipment I wanted to buy and I organised everything in advance.
I planned that I wanted our babies gender to be a surprise. It didn’t matter providing they were healthy.
I never planned to be in 5% of babies born needing additional support at birth.
I never planned to hear that my child’s condition was considered "incompatible with life."
I never expected to be told that my child would be unable to eat, unable to drink, unable to walk, talk and at some points breathe for himself.
I never expected to be that mum.
The news that my son had Downs Syndrome (caused by having an additional 21st chromosome) and other associated complex medical conditions was never something that I planned to hear. But every day in the UK a mum will give birth to a baby with Downs Syndrome and back in 2007 that mum was me. For parents who are given the news whilst pregnant between 88% and 92% (depending on what data you read) will go on to have a termination.
Before having my child I knew very little about Downs Syndrome, I was a young mum and had always associated it with being something that happened to older mums. For us, the Downs Syndrome was minor in comparison to his other medical conditions but that news changed my life forever.
We had two very different experiences as we had two consultants tell us the news (both thinking they were the first.) One was very gentle and mild and the other very direct and to the point.
Both gave me, at 35 weeks pregnant, the option to terminate the pregnancy.
I was given the choice 2 weeks before my son was born whether or not he had the right to live or die. I have always been pro-choice and have always felt that women should have the choice over what happens to their body but I cannot help but feel let down by the way my options were presented and the information I was given.
I was led to believe that my son's quality of life would make it not worth living. I was given a lot of incorrect and out of date information and being a planner I went and read everything that I could about Downs Syndrome and his particular health conditions. But when you have medical professionals telling you what is right for your child and your body you believe them.
I understand why I was given all the negatives but I wish I had been told that I had other options as well.
My son has complex health needs, is severely disabled and has Downs Syndrome. He is also fun-loving, sometimes naughty, always cheeky, he loves to sing, he loves animals (especially cows) and babies. He has amazing empathy - his hearing loss often means that he struggles to keep up with conversations but he can read a room better than anyone else I know and gives amazing hugs to anyone who needs them.
If I could give any advice to 2007 me, or anyone else in the same position it would be to read and educate yourself. Meet other people in the same situation especially other parents. Your journey will be harder. It will not be what you planned for but it will be amazing you will find a whole new family of people there to support and guide you - they will become your best friends. Sometimes you will cry - but you will also laugh more than you ever have before and you will receive more love than you ever imagined.
Whilst I may understand why I was given the option to terminate my pregnancy I wish it hadn’t been the first option I was given and I wish that I had been told about the positives alongside the negatives.
If I could give advice to anyone who has to deliver the news “your child has Down's Syndrome” I would like to ask them to be honest and explain the hard times but also that it is not all-consuming and that whilst things won’t be what I planned for that there are also many positives and offer to link them to other parents like those at Little Miracles.
My son has Downs Syndrome, and I am ok with that, he is an amazing young man who deserves to be celebrated his life does not have less value just because he has an extra chromosome. I like to think of him as being a bit like one of the X-Men - genetically enhanced to love and accept others. For anyone who has been given this or similar news please speak a parent of a child with the same condition. Speak to Little Miracles. Get help and support and make up your own mind - termination may be an option but its not your only option and you can educate and plan what you want to happen.
For anyone else reading this thank you for reading my story. To support a family like mine it costs under £20 - could you donate £20 to help a family in the same position know their options?