Real Life: The Gift Of Life

Ashley Steele is unusual for a nine-year-old - she can't think of anything she wants for Christmas. It's not that she's spoilt. It's just that all her wishes have already come true this year and she has received the greatest gift of all - the gift of life.

Ashley was born with a kidney disorder so severe that doctors feared she wouldn't survive.

Her life has been marred by long hours of tortuous treatment and a dozen operations. She has been constantly tired and unwell. Just day- to-day tasks like getting ready for school have been a struggle.

But last month all that began to change. She was given a new kidney - and the donor was her mother.

"She can't wait to sit down at the table for Christmas dinner with all the trimmings," says mum Elaine, 31. "In the past, she had to be fed most of her nutrients in liquid form by tube. Now she's discovered the pleasure of food. It's amazing how quickly she's changed - miraculous. A couple of months ago, she was constantly unwell and needed treatment twice a week. Now there's so much to look forward to."

Ashley was born on June 15, 1992, at Simpsons Maternity Hospital, in Edinburgh. She was Elaine and her partner Graham's first child. The couple had met a year earlier - "We fell head over heels. It was an incredibly passionate romance" - and were delighted to be starting a family. Yet their joy soon turned to anguish. Ashley was four weeks premature, weighed just 3lbs 15ozs and there were complications.

"The consultant explained that Ashley had dysplasia kidney failure which meant that her kidneys were very small and barely functioned," recalls Elaine. "His exact words were, 'Don't get your hopes up, this situation can be catastrophic'. I was in shock. Most of those days passed in a blur. I felt an immediate bond with Ashley and I couldn't believe we might lose her."

Over the next few days Ashley's condition deteriorated. She grew weaker and at one point a nurse asked Elaine and Graham if they should let nature take its course.

"Graham got quite angry at that," says Elaine. "We told her Ashley was our child and we wanted her to have every chance."

After more treatment, Ashley showed signs of recovery. Three weeks later she was transferred to the Sick Children's Hospital where Elaine and Graham learned how to put a feeding tube down her nose and administer medication. After another fortnight, they were allowed to take her home for two hours each day. Then at six weeks Ashley finally went home. "When she was asleep we tip-toed round her, checking she was breathing," says Elaine. "She looked so vulnerable with the tubes in her nose."

Graham, a scaffolder, was often away on contract work and Elaine had to give up her job at Jenners, Scotland's leading department store, to cope with the round-the-clock care and routine trips to the hospital for Ashley's dialysis.

"It was an enormously time- consuming and rigid routine and looking back it was a full-time job. I missed parts of my old life, but I love my daughter and as long as she was cheerful, I could cope. It was so hard when she was poorly."

Elaine tried to make Ashley's childhood as normal as possible. She would take her to the park and swimming. But Ashley's illness meant she had very little energy so she couldn't play, let alone run around for hours like other toddlers. And on every outing Elaine had to go loaded down with special equipment in case anything went wrong.

When Ashley was five, she began receiving dialysis at home and was able to start school. "Her first day was an especially proud time for us as we'd wondered in the bad times if we'd ever see it," says Elaine.

Things improved vastly and Elaine and Graham felt ready for another child. A year later their second daughter, Brooke, was born. Ashley loved having a baby sister, but as Brooke approached her first birthday, Ashley's condition deteriorated and she was rushed to Yorkhill Hospital, in Glasgow, fighting for her life.

"It was just about the lowest point," says Elaine. "Ashley was seriously ill. We'd come so far. I don't know how we'd have coped if she hadn't pulled through. But she's a fighter." Fluid had built up on her lungs. Doctors said the home dialysis was no longer adequate. Ashley would have to travel 50 miles to Glasgow twice a week for treatment. If that wasn't bad enough Graham's mother suddenly died after a heart attack. "It was a really tough time."

Thankfully, Ashley's condition began to stabilise, and in March this year her name was put on the list for a kidney donor. The family were warned they might have a long wait as Ashley had a rare tissue type. Then it was suggested they might consider being donors themselves.

"Graham was tested first, but was crushed to learn that he wasn't suitable. He really wanted to be the one. It would have been devastating if neither of us were a match, so I was overjoyed to get the good news. It was daunting to think about the consequences if one of us didn't pull through. I would willingly have given my life for Ashley, but I tried to imagine how she would feel if she lived and I died. I didn't want her to go through that. I went into hospital on my 31st birthday. Ashley told me, 'Be brave mummy'."

The operations lasted three hours and were declared a success.

"I saw Ashley three days later when they took me to intensive care in a wheelchair. It was very emotional. I could barely move because of the pain and I felt so helpless not being able to cuddle her."

Within a week both were staying in a hospital flat enjoying their first proper meal together. "I made her a hot dog and macaroni and she really enjoyed it. It was incredible to see the change. She'd suddenly got a great appetite, more energy, better concentration and looked so healthy."

A few days later, the family found themselves in Pizza Hut and watched aghast as Ashley tucked in.

"She can't wait to get back to school and is hoping to be in time for the Christmas disco. She's just got her first fashionable top, which shows her midriff. Before the operation, all the tubes would have ruled that out. She's hoping to have a sleepover soon and she'll be able to go on camping trips, because I don't need to be there all the time."

Many of the anticipated pleasures are the simplest things. "Ashley used to love swimming. She had to give it up at five in case her feeding tubes became infected. She's really missed it. My daughters have never been in a pool together. I can't wait to see them splashing each other."

At this point Ashley suddenly announces that she's thought of what she'd like for Christmas - a swimming costume. Perfect, says Elaine. "Ashley has been so brave and I'm proud of her. We've got so much extra time and we're going to enjoy it."

OUT WITH THE OLD

Here is how a typical day went for Elaine and Ashley when she was five...

7.30am Breakfast. Ashley has to be connected to a machine, which takes 20 minutes to administer a liquid feed, which Elaine has made up the night before.

8.15am Medication. Three different types of tablets.

9am Ashley is taken to school. Elaine prepares feeds for Ashley and meals for herself and Graham, and does the chores and shopping.

2.30pm Ashley is picked up and given her "feed".

3-6pm Elaine prepares Ashley's feeds for night-time and morning, spends time playing with Ashley.

6.30pm Ashley's bathtime. Elaine has to take care not to expose tubes to risk of infection.

7.30pm Feed and bed-time story.

8.15pm Elaine gives Ashley nightly injection of epo, to build up red blood cells count, and twice-weekly injection of growth hormone.

8.30pm Ashley's bed-time - and night-time feed.

8.30-11pm Elaine unwinds.

11pm-7am Elaine may be woken at any time - the feeding machine has an alarm in case Ashley lies on the tubes and stops the flow.

Copyright 2001 MGN LTD
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