B – Beginnings

The post is something which I wrote when I was planning to talk to Midwives as part of my job at West Herts Hospital – something which I still hope to do when the opportunity arises.

Before I came into the world, my Mum gave birth to a lovely baby boy who has grown up to be a lovely big brother to me. Mum then became pregnant with me enjoying a ‘normal’ pregnancy (I probably kicked her more than she would have liked to be kicked but what baby doesn’t.) Mum always jokes that I was in a rush to come out and she was still walking up to the delivery suite when I was almost ‘popping out’ again, I am sure this is also quite common. What is less common is that I got into difficulty and decided to turn around at just the wrong moment which caused the umbilical cord to get wrapped around my neck and when I was delivered I was blue and was therefore taken to the Special Care Baby Unit. Before going further, I just want to make it absolutely clear that my Mum and Dad wouldn’t change me for the world and they love me as I am but I still get upset when I think of what my Mum and Dad went through. I can only imagine what was running through Mum and Dad’s mind will our daughter even survive, will she be able to live a meaningful life, what does this mean for our other child, all we wanted was a baby girl without anything going wrong. Mum did not keep a diary of the events but the one thing Mum and Dad can confirm is that I was in Special Care for 1 week. Mum also has a recollection of my Dad thinking that the oxygen source I was connected to was not full enough.

What then followed was eight months of knowing something was wrong with their new baby but yet no knowing exactly what it was. It was nine months before I was diagnosed as having Cerebral Palsy.

Once a diagnosis was given, my parents could arm themselves with knowledge and access appropriate support. A major source of help was that I could go to what was then called the ‘Spastic Centre’ in Watford which gave me 4 years of intensive physiotherapy and speech therapy. After my birth, Mum and Dad was told that I would probably never walk, fortunately, they made the difficult and upsetting decision of allowing doctors to operate on my hips and I took my first steps aged 3.

Fast forward 40 years I have a degree in Social Sciences specialising in Sociology and Social Policy. I have been employed by West Hertfordshire Hospital for over 15 years and have been recently given the job of Disability Champion. The other achievement which I am really proud about is that I live on my own which was an enormous step for me to make, not knowing whether I would be able to cope but with practical help from my parents I am able to cope and I love it.

Why do I now feel passionate about sharing this with midwives/paediatricians.. I want them to bear my story in mind next time they are involved in a difficult birth or have a consultation with a disabled child and their family. Obviously they would still need to remember that the outcome may not be as positive as mine. the baby may have more brain damage, and may not be from such a supportive family BUT then again the baby may grow up to have a good and fulfilling life, just like me. Whatever the circumstances I would advice that that medical professionals are positive and encourage the family never to give up on what they feel is right for their child. Mum and Dad disagreed with the local schools and fought to get me into mainstream school from aged 5 and this was the key to the rest of my life. Yes, there may be challenges but all the determination which they will need is well worth it.