Viv’s Story

‘My funny little ear’ by Viv

I was born a long time ago, in 1948, when medical knowledge was less advanced and there was less support for parents and children.

Moments after I was born, the nurse handed me to my mother and she reacted in horror when she saw me. I looked odd as my left ear was very deformed and just a squiggle. The doctors did not know what the problem might be and thought I might be brain damaged. My mother did not want me near her for a couple of days. My father’s reaction was even more extreme and said when he saw me “if she was a chicken, they would ring her neck”. My father moved on soon after I was born.

Not the best start in life but my mother grew to love me and she told that my ear problem was caused by the way I lay inside her womb. I was referred to Great Ormond Street Hospital and had regular outpatient appointments. My hair was very straight and the man who worked the lift knew me well; he was very friendly and called me ‘curly’.

When I as 4 years old the doctors decided to operate to try to open up my ear canal so that I could hear. I was in hospital for about one month. It was a hard time for me. At that time visiting hours were only for a couple of hours every afternoon. My mother worked and could not often visit, plus she had my older sister to care for. Visitors had to be 16 or over. I was very young and remember feeling abandoned. I had a skin graft taken from the top of my right leg that was used when the surgeon tried to create an ear canal. The operation was not a success and there was no improvement in my hearing. The small scar on my leg, where they took the skin craft, just stretched bigger and bigger as I grew in size.

My sisterhood called me ‘cauliflower ear’ and I had a hard time at school. I had some elocution lessons as my speech was not always clear. I did not know what caused all these problems and thought I was just odd and there was no-one else like me. But I was a resilient little girl and became a toughie; learning to fight my corner both physically and verbally so other children stopped making fun of me.

At school I often had difficulties hearing the teacher and made up for my ignorance when I missed things, or misheard things, by being naughty. When I was 14, the deputy head told me I would be excluded from school if I did not pull-up my socks. I acted all innocently, looked down at my socks and said, “but they haven’t fallen down”. Yes, I was now in even more trouble!!

Adolescence was a difficult time as I was very conscious of my funny ear and scar on my leg. I became anxious about developing close physical relationships, or just having fun as a teenager, as boys would sometimes make unkind remarks when they saw my ear. So I made up a story about a car accident to tell people; this way people were kinder to me.

Despite all this I did okay at school and achieved a few ‘O’ levels (they pre-date GCSEs). No-one advised me about how I could improve my hearing. However, I developed techniques of my own that have been very useful to me throughout my whole life. For example, the mother of my best friend said she liked talking to me as I always looked at her when she spoke. Without consciously realising it, I had developed this helpful technique. I became a good listener and this was a positive asset when I trained as a social worker as I pay attention and look at people when they talk to me.

It was only when I was in my thirties, after my mother died, that I decided that I wanted to know more about my ear condition. I was referred back to Great Ormond Street and for the first time it was explained to me that I have microtia and it had nothing to do with the way I was laying in my mother’s womb.

In 2014 I had a balance problem and was referred to St Thomas’ Hospital. The ear consultant was marvellous and was the first person to mention to me that something could be done to give me some hearing on my left side. There were further investigations and this year I have been given a baha. It is amazing, that after 66 years not only have I met other people with the same condition but I can hear on the left side. It feels like I have a super power! A whole new world has been opened up for me. If only Microtia UK had existed when I was born!