I’m a mother of a beautiful nine month old baby boy who has spina bifida, which means he was born with an opening in his lower spine. My son* has what they call the severest type of the condition (I won’t bore you with the medical terminology), which basically means he is paralysed from the waist down due to nerve damage. As if that on its own wasn’t overwhelming enough for any parent to hear we were told of an additional diagnose called hydrocephalus; in layman terms “water on the brain”. A few months back I could not dream of saying or writing all these perceived to be such negative descriptions of my son without turning into an absolute emotional wreck. I’ve come a long way, but I wouldn’t have been able to do so without the support of my loving and (sometimes quite annoying) family.

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How the prognosis chapter all went down was basically with a florescent post-it note handed over to me to take home by a nurse (the actual fetal medicine consultant was unreachable) after my 21 weeks scan appointment with the words ‘spina bifida’ written on it. I must say the way that the news was delivered to me was quite shocking considering that that medical practitioner who stood in front of me would have done what they had to do with me or witnessed a consultant do the same on ample occasions, but still managed to make a muck of it! As she started to breakdown the complications of the condition I had no reaction and how could I when after every sentence she would squeeze in the words “maybe” or “not confirmed”. I’m the type of person who operates on facts and usually opts for the realistic approach on matters, so in my head alarm bells were ringing as judging by her words “nothing was certain”. Unsatisfied with my reaction to the most disastrous news of the century she simply said “do you understand what is happening here? you are going to have a disabled baby, but you also have the option to terminate”. That’s when I was handed over the post-it note and told to return in a week when the consultant would explain everything to me. As I took the post-it then she added “please don’t Google anything that is not published by the NHS”. Well, I’m quite proud to admit my husband and I Googled our socks off during that slow snail paced week, NHS literature or not, and we felt a whole lot better too! I think I should write a book in memory of this method of delivery and call it ‘the post-it prognosis’.

Now that lovely medical explanation is out of the way, I’d like to formally introduce myself to you. My name is Karen and I’m an educator at heart as well as by profession, oh and proud to now publicly announce that I’m also an Artist. I found it so refreshing to be able to utilise old skills and revive an ancient hobby, which little to my surprise would later become my survival tool. I’m like any other ‘Yummy Mummy’ meaning the good old chocolate fudge cake takes priority over shedding any form of baby fat. Through my most recent experiences I have realised that knowledge truly relieves the heart from avoidable pain. Receiving the prognosis of my unborn baby was the most terrifying news I had ever heard because of all the unanswered questions running riot through my head. This is why I hope to discuss, tackle and explore the challenges faced by expectant parents of disabled children in hope to help others in my shoes and educate society on this topic.

a baby sitting in the bath

The blessing in disguise for us was being in hospital for what felt like eternity because we were exposed to so many different disabilities and had the opportunity to interact with amazing parents and children. There was always that automatic attraction created by a platform of empathy that nobody looking in could even begin to understand, like a special membership only club that I was so proud to be a part of. Now coming home or back to reality as I called it back then wasn’t quite as fulfilling because unfortunately people weren’t as understanding as my fellow club members were. Some of my family and friends were hesitant to come and visit us because they assumed we wouldn’t want visitors and when they finally did come they all had the same reaction, “Oh but what’s wrong with him? He’s normal” I think I may have disappointed them by not having a three-eyed goblin monster to put up for show.

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