Grace Robson
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Grace's Story
After being told that the prospect of having a family was very unlikely Grace was born at 38 ½ weeks on 14-7-2000 after a normal pregnancy and a normal labour, three days after our nineteenth wedding anniversary!
At six weeks she developed a barking cough and by seven weeks she was struggling to breathe and had a noticeable stridor. The doctor had her admitted to our local general hospital where, after extensive tests - including a chest x-ray, they couldn't find anything wrong. She was treated for croup and we were sent home after two days.
A week later she was readmitted. After stripping her off to be weighed, one of the doctors noticed a raised birthmark on her back and suggested that she could have a subglottic haemangioma. The ENT came round and agreed that this could be the problem. Grace was transferred to the children's hospital in Sheffield where she was scoped and a tracheostomy placed. She was nine weeks old. After three weeks in hospital we felt confident enough to look after her ourselves and took her home. Fortunately throughout all this I was able to continue breastfeeding.
The first Christmas was a nightmare - the trachy kept plugging, so on Boxing Day she was admitted to hospital and placed on humidity. After recovering from RSV which she developed in hospital Grace was scoped again and a larger trachy was placed.
Life slowly became easier, although during the first year she was admitted to hospital seven more times. The suction gradually decreased so that I was able to take her out in the car on my own.
At fifteen months her voice started to come back and by the time Grace was two she was saying a few words. Her physical and mental development is normal for a child of her age and she has no difficulty eating. The haemangioma has shrunk quite a lot, but the ENT thinks he may have to operate to get the rest of it out, as it hasn't gone down by as much as it should have done. We have decided to give it another six months and then we will make a decision after her next scope just before Christmas.
O Robson 11-8-2003
