Craniosynostosis is a condition that happens when the bony plates in a baby or toddler's head close up too soon. The result is the head can be shaped at bit differently. Children with this condition are usually healthy and bright. The cause of this condition is unknown and all treatment requires surgery. I was born with craniosynostosis. I've had many operations. Most of them were when I was very young. I used to feel bad about how I looked. But now I don't worry about it. I am happy to have a loving family and fantastic friends.
Posted by: Bernadette Lancefield, on 19/10/12
My parents supported me.
A baby's skull is comprised of bony plates, held together by fibrous bands known as cranial sutures. Usually, the sutures between the bony plates gradually disappear and the plates fuse when the child reaches the age of two or three.
Craniosynostosis (otherwise known as cranial stenosis) occurs when the sutures are absent or disappear too soon. This results in the baby's skull fusing prematurely, and thereby causing the head to be abnormally shaped. In most cases, children with this condition are relatively healthy, have normal intelligence and a normal life expectancy.
Craniosynostosis causes and treatments
The causes of craniosynostosis remain a mystery to science. Research suggests genes may contribute. Usually, however, there is no family history of this condition.
All treatment options involve surgery and are carried out during infancy. The aims of surgery include making enough room in the skull for the brain to develop normally, relieving pressure on the brain, and improving the appearance of the child's head. In some cases, a person with this condition will need to undergo numerous operations until their body stops growing.
I was born with craniosynostosis and throughout my life I've had many operations. Most of them occurred when I was a toddler or young child.
Because most of the major operations I had were carried out before I turned three, my memory of that time is blank. I've been told, however, I suffered from sleep apnoea and various other health complications associated with the condition.
When I was a child, I hated the gas used in general anaesthetics. In the operating theatre, nurses tried many techniques to cajole me into accepting the anaesthetic. Once, they played music from the Grease soundtrack as that was my favourite movie back then, and still is today.
On the whole, treatment for my condition has been successful. I'm grateful to the doctors but, most of all, I thank my parents for the superb way in which they supported and looked after me throughout my life. There are countless times Mum persevered and even chased doctors down to find out answers about my health.
Craniosynostosis and self-esteem
Having an abnormally shaped head impacted significantly on my self-esteem. In the past I felt inferior not only in abilities, but also in appearance. The chances of ever finding a man who would be attracted to me seemed very slim indeed.
Over the years I tried to make the best of my appearance. I wear sunglasses to both conceal and protect my slightly protruding eyes. My fringe also covers my slightly caved-in forehead.
Nevertheless, I've always known I look
different. Throughout my teens I was afraid of being rejected because of my appearance. But fortunately I was never bullied at school. My sense of self-worth, however, was often at rock bottom.
Gradually, with the support of family and friends, I learned to value myself. I began to realise we are all different shapes and sizes. It's what's on the inside that counts most.
I've been very blessed to have a loving family and fantastic friends. Today I'm engaged to the man of my dreams. I don't worry now about having craniosynostosis. That's because I know the people who really matter in my life look past my differences and accept me for who I am.
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