100 x-rays and she has had most of her bowel removed but doctors still don't know what's wrong with her

Story by Claire Elliot

SHE’S had more than 100 x-rays, 38 operations and most of her bowel removed but doctors still can’t tell nine-year-old Karen Chinskie what’s wrong with her.

The brave schoolgirl has spent almost half her life in hospital as puzzled doctors try to work out what’s causing her severe abdominal pains.

But Karen, who has endured more than 70 hours on the operating table and battled hospital super bug C-diff three times, rotavirus, and septicaemia, remains a “medical mystery”.

Despite her constant agony, the smiley youngster looks like any other healthy little girl as she runs around playing at her Inverness home.

Her ordeal, however, has left her so afraid of needles that doctors even had to give her ketamine - a drug normally used as a horse tranquiliser - to calm her down before surgery.

Her worried mother Isobel, 31, however, said: “It’s awful. She‘s absolutely terrified. Every time they put a line in her she thinks she’s going to die.

“It takes six of the children’s ward staff to hold her down as she’s so terrified. She’ll shout: ‘just leave me alone and let me die’. It brings me to tears to hear her say that.

“I just wish they could give us a diagnosis so she can get some relief and the life that she deserves. She’s in pain all the time.”

Karen’s first visit to hospital was when she was just a baby when she started fitting after a fall from a rocking horse.

Blood tests revealed she had an iron deficiency and she was prescribed supplements.

But despite being given increased amounts, the medication failed to ease Karen’s severe stomach aches and constant infections.

Since then she has had 38 operations - five major and 33 minor surgeries - 100 x-rays, MRI scans, tests and biopsies, in an effort to diagnosis the problem.

Part of Karen’s bowel was even sent to London’s Great Ormond Street Hospital for testing.
 
But Mrs Chinskie, said: “At the moment they just don’t have an answer.

“At one point they even told me I wasn’t feeding her enough fruit and vegetables.

“She also saw a physiologist but they said there was nothing physiologically wrong with her and that she was medically ill.

“It’s very frustrating because she’s usually well for about eight days and then the rest of the time she’s unwell.

“When I get her to school I think ‘great’, then I’ll get a call asking me to go and collect her because she’s not well and needs to see the GP.”

In October 2008, after six years of differing opinions, surgeries and tests at Raigmore Hospital in Inverness and the Royal Aberdeen Children’s Hospital, Mrs Chinskie was finally given some hope when her daughter was given x-rays and an examination under general anaesthetic.

Karen was then taken into theatre the next day for an eight-hour operation to remove three-quarters of her bowel, which was not working effectively as it was twisted.

Complications, however, left the youngster fighting for life in the high dependency ward and Mrs Chinskie, her painter and decorator husband, John, 33, and their other young children were called in to say their goodbyes.

“She was so poorly,“ said Mrs Chinskie. “It was like her body had shut down.. Even the chaplain came in. I was just beside myself, telling them, you‘re not going to let her die’.”

A week later Karen was rushed into theatre for an emergency three-hour operation on the remaining part of her bowel, which had become knotted and blocked.

She immediately began to show signs of improvement giving, Mrs Chinskie the chance to return home for a two-day stay with the rest of her family in Inverness.

But the mother-of-five, said: “The next day at 8.15am I got a call asking to give consent over the phone for an anaesthetic for emergency surgery.

“They had to give her a nasal gastro tube and put her on a feeding machine.

“It was awful. I had left this beautiful kid sitting up and dressed and looking well. But when I got back she couldn’t talk, she couldn’t swallow, and she couldn’t walk. She sat in a wheelchair with her head to one side like she had had a stoke. She had returned to being an 18-month-old baby.”

Karen had contracted C-diff, a hospital superbug, which she was struck down with three times in total.

The youngster , who spent months learning to walk and talk again, has had to battle numerous infections throughout her short life.

She is more susceptible to contracting infections due to her weakened immune system as a result of the number of antibiotics she has taken.

As a result she has spent months in isolation in hospital and her mother has received countless calls from her in the middle of the night asking her to come and collect her.

Mrs Chinskie says she now keeps a diary of her daughter’s symptoms, the medication she is on, who administers it, and records her temperature twice a day, to try and help medical staff understand her ongoing condition.

She said: “She might look like a normal little girl she can’t do all the things other little girls do.

“Between 2002 and 2008 she was always in and out of hospital but she still had a relatively normal life.

“Now she’s hardly ever at school because she’s unwell and at the moment no one has got an answer. They say she‘s a medical mystery.”