Facial disfigurement
Isla was born facially disfigured. Now her mother, Anna MacInnes, has started a support group for other parents whose children look different
I don’t really know where to start but I guess when my daughter was born is a good enough place. Isla was born seven weeks premature by emergency section and weighed in at 4lbs. She was in the neonatal and special nursery for three weeks. During this time I noticed a small pink mark by her left eye. I thought she had been lying on that side for too long. It was so faint and small I didn’t really think anything of it. But about a week later I decided to ask one of the doctors about it. I was told it was a birthmark and it was nothing to worry about. How wrong that doctor was.
We came home from hospital when Isla was four weeks old. The mark rapidly became darker and the eyelid began to swell. At six weeks her left eye was totally covered by this swollen red eyelid and she couldn’t open it. So we went to our GP who referred us to the local hospital. After another month we got an appointment at the hospital to see an opthimologist. All this time the birthmark had continued to grow at an alarming rate.
That’s when the comments started. Everytime I went out of my house the reactions would start. The looks of disgust and ‘OH MY GOD’ rang in my ears, day after day. There were the ‘Oh, poor thing – has she hurt herself?’ and the ‘Look, elephant child’ comments. Mostly it was just the long stares and pointing of fingers. Some people looked at me as if I had caused the mark.
Sometimes I just wanted to hide away. Sometimes I was so fed up that if someone even looked twice I would snap at them. It all got so hard to bear. At the hospital I learned more about my daughters birthmark. It’s called a strawberry haemangioma. The usual pattern means that it would grow rapidly for months before it would start to shrink. This could take up to 12 years depending on the size. There was no option for surgery as the haemangioma stem is in her brain. To try and cut this out would risk bleeding in the brain which could be fatal. Secondly, as the birthmark was over the eyelid, the next problem was Isla’s sight development. The first advice I was given was that Isla was blind in that eye and that there was nothing that could be done. I didn’t believe this and after much stomping around we found a specialist in Manchester and finally got correct advice and treatment.
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