Health: In mourning for a lost limb: When a child loses a leg it may be the parents who are more traumatised, but a brave face is crucial to rehabilitation, writes Annabel Ferriman

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Indy Lifestyle Online
WHEN three-year-old Barry Smith had to have his left leg amputated after falling on an electrified railway line, his mother, Christine, felt her world collapse around her.

She was convinced that it would be years before he could walk again and that he would never lead a normal life. Barry was an exceptionally active child and had managed to get on to the railway line by wriggling through a hole in the fencing, while in the care of a childminder.

'I felt terribly guilty. I felt that I should not have been out at work, because then he would not have been with a childminder,' said Mrs Smith, who lives in Croydon, south London.

But Barry, who is now nine years old, has learnt to do everything that other nine-year-olds can do - he can ride a bike, swim and climb trees. 'There is not much that Barry can't do actually,' Mrs Smith said. 'He has to put up with some name-calling at school, but that is human nature.'

She said that when she had to break the news to her son he could not accept it at first.

'First he asked whether the doctors could just take off his toes. He then accepted that he would have to lose his foot. Finally, after several days, he was able to cope with the idea of losing his leg. That was his way of dealing with it.'

Barry's story may be some consolation to the parents of another nine-

year-old child - Leigh-Ann Johns, from South Bank, Cleveland, whose legs were crushed in a car accident on Easter Sunday. Still critically ill in Middlesbrough General Hospital, she remains unaware that she has lost her legs.

Leigh-Ann was walking home from the shops with two friends, five-

year-old Rachel Reed and her sister, Maria, aged seven, when a high-performance Ford Escort, driven by a 19-year-old youth, mounted the pavement, killing the two sisters and maiming Leigh-Ann.

She has had to have both legs amputated above the knee, which means that learning to walk again will be particularly tough. 'The level of amputation is very significant,' said Mr Andrew Jackson, consultant orthopaedic surgeon at Queen Mary's University Hospital, Roehampton.

'When it is below the knee, children can continue to do everything. They can run, jump, kick a ball. When it is a bilateral (on both legs) above the knee, it is very hard going. She will probably need a wheelchair for long distances.

'The attitude of parents is crucial to a child's rehabilitation. If they can put a good face on it and appear optimistic in front of the child, and give support and encouragement, it will make a huge difference.

'There is no doubt that having artificial limbs is a problem. This child will be tied to a limb-fitting centre the rest of her life; if she overdoes it, she will experience rubbing problems and the legs will sometimes break. But it is manageable, and not as bad, in my view, as a serious head injury. The child should be able to go to a normal school and has the prospect of a job,' Mr Jackson added.

Although the physical injury to Leigh-Ann is extremely serious, experts say that the psychological trauma to her parents may be even worse. According to orthopaedic surgeons and specialists in rehabilitation, children who lose legs through accidents bounce back quickly but parents grieve for the healthy child they have lost and for the expectations that have been dashed.

'Children themselves are very resilient,' said Dr Linda Marks, consultant in rehabilitation medicine at the Royal National Orthopaedic Hospital, Stanmore.

'They tend to face adversity much more readily than adults. They want to get on with their lives. They are a pleasure to treat. They just want the hardware to get going.

'But the parents' reaction when a perfectly normal child is injured is often one of despair. Our first job is to reassure parents that it is not the end of the world and tell them that good functional mobility can be achieved with artificial limbs. You have to help the parents to be positive, so that they can be positive with the children.'

Leigh-Ann will probably have to wait at least three weeks, while the stumps of her legs heal, before she can be fitted with artificial limbs, and another two weeks after that, before the artificial limbs are made. She will start by wearing them for only half an hour at a time, several times a day, until the skin toughens up.

After a few days, she will be encouraged to take some steps, holding on to parallel bars. At the end of another eight weeks, she will probably be able to walk round the house unaided, and eventually she will gain the confidence to get around outside, but long distances may cause problems because of the energy required.

Bilateral amputees use two-and-a-half times as much energy in walking as those with two normal limbs. Because she is only nine and still growing, the legs will probably have to be changed about two or three times a year.

Samantha Chesterton, 27, is a double amputee who has managed to live a full life despite her disability. Now married, and working as a secretary in Welwyn Garden City, she was born with the tibia bone missing in both legs, and underwent two above-knee amputations when she was a year old.

She found the primary school years the worst because she was badly teased and she wishes that she had had some contact with other amputees in her early life.

'I never met any other amputees of my age until I was 20 and went to the United States to test out some new artificial limbs. I remember turning to my friend and saying: 'These are my people.'

'I cannot say things will be easy for this little girl. They won't be. In summertime I get sores. I come back from work and just want to get the damn things off.

'But things are better now than when I was younger. My legs were made of wood until I was 17. They were very heavy and ugly and I could never wear nice clothes. But now I have a new type of suction-fitted limb, and I can wear skirts and shorts, with different coloured stockings to make my legs look tanned in summer. I also enjoy riding and have gone skiing.'

Nevertheless, parents whose children have just suffered an amputation can feel extremely isolated and lonely. Linda Townsend, whose daughter, Laura, had to have her foot amputated at the age of seven because of a congenital abnormality, remembers wandering round the shops and looking at all the dresses that she thought her little girl would never be able to wear.

She has written a booklet for parents in her position, published by Steps, a charity for children with lower limb deficiencies. It was launched last year by the actor Dudley Moore, who was born with a club foot and who had to undergo seven operations to correct it.

Mrs Townsend, who lives in Crawley, West Sussex, said there was a serious lack of information when her child was born and when the family was facing the decision about amputating her foot.

'That is why I wrote the booklet. I experienced a lot of distress and a sense of isolation. It was a real struggle to get clear information. You feel a great sense of helplessness.

'Then when Laura had her foot amputated, we went through a period of psychological adjustment. She felt a sense of loss about her foot and I respected that. She even asked whether she could keep it - but I did not respect that.

'I had to adjust to the look of her leg without a foot. But the operation was necessary for her mobility, so aesthetics had to take second place. Also, before the operation, when you know your child is going to be in pain, you don't know how strong you can be. My booklet contains personal accounts from other parents.'

More than 2,500 children in Britain are missing one or, in rare cases, both legs, with 150 new amputations being carried out each year. About half the new cases are due to congenital abnormalities, while the rest are divided roughly two to one between accidents and tumours.

'Lower Limb Deficiency: A booklet for parents', available from Steps, 15 Statham Close, Lymm, Cheshire WA13 9NN, price pounds 2.

(Photograph omitted)

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