'Our family's two years of agony'

Michaela's parents want to see better staff training

By Jane Elliott BBC News Online Health Staff

By the time little Michaela Noble died, aged just two years, she had undergone hundreds of medical procedures in five London hospitals.

She spent 14 out of her 24 months in hospital.

She had also spent hundreds of hours being cannulated, heel pricked, bled and lumbar punctured as well as undergoing a bone marrow biopsy and having a kidney and three bowel biopsies.

But on 12 October 2001 she died following a liver transplant.

Retrained

Her parents, Peter and Dorit Noble, said that although doctors tried desperately to save their daughter, unfortunately she spent much of her life in pain and fear.

They now want to see doctors and nurses retrained to minimise the number of procedures to which tiny babies, like Michaela, are subjected.

They are also calling for more funding to be put into assessing the psychological impact of medical procedures on the families and children, to ensure that desperately sick children like Michaela are not used as guinea pigs.

The Nobles also want to ensure that there is a better understanding of how to minimise pain levels in newborn babies, or neonates, by using methods such as hypnosis for people unable to use general aesthetic.

Sadly, the medical world accepts pain as inevitable and adopts an apathetic attitude towards any further investigation of this crucial aspect of the inpatient's life

Dorit Noble

And they want to see staff get special training in handling and communicating with the parents of desperately sick children, like Michaela.

Up until 1986, young babies and infants were assumed by the medical profession to be unable to perceive pain and were seldom given powerful pain killers after surgery.

Michaela had months of treatment

Dr Richard Howard, director of the world's first pain research centre for children at Great Ormond Street Hospital, explained that this view is now no longer held.

But he admitted that more research is needed to ensure babies such as Michaela get the best treatment with the minimum pain and invasion.

"It is now recognised that babies in this position do have pain.

Drugs

"They are a very difficult group because they are so small and vulnerable we are doing a lot of research on this.

"Many hospitals are taking steps to minimise pain, but we do need a lot more research."

He said doctors worried about the effect that powerful drugs could have on neonates, but said there were anaesthetic creams that could be used to minimise pain before procedures like heel pricks.

Michaela was born at just 31 weeks and weighed just 1.2kg, after her mother, Dorit, suffered from pre-eclampsia, following a very low-risk pregnancy.

Michaela died after a liver transplant

But during her time in the womb Michaela had not been growing properly and when she was born her stomach was distended.

Medics said she would be home in a month, but she developed necrotising enterocolitis - an inflammation of the bowel - and despite being given antibiotics it failed to clear.

She developed gangrene of the stomach and had the first of four stomach operations.

Doctors were still hopeful about her prognosis, but she became sick again and needed more bowel and abdominal surgery.

Unfortunately Michaela's kidneys became damaged and she needed four doses of antifungals each day.

Doctors fed her vitamins, minerals and iron through her vein - TPN, but she was unable to be weaned off this and eventually it took its toll on her liver, causing it to fail.

Haunted

Mrs Noble said that a year on she is still haunted by the whole procedure and angry that so little has been done to make life more bearable for parents like her.

She said that although anaesthetic creams were used on Michaela, that they had proved ineffectual and that she would have liked to see doctors explore other methods of complementary pain relief to help her daughter.

"How can it be OK to do these things to tiny little babies?

"I was there during those hundreds of hours, holding her, when I was allowed to, comforting her and mostly trying to shield her from the fear and pain.

"Now that she is gone, I am haunted by those agonising hours and I am disturbed by the fact that Michaela's life could have been so different if repeated painful procedures - the bread and butter of hospital life - were as interesting to the medical world as, for example, stem cell research.

"Sadly, the medical world accepts pain as inevitable and adopts an apathetic attitude towards any further investigation of this crucial aspect of the inpatient's life.

The Nobles are rebuilding their lives

"I was very close to breakdown. "

More than a year after Michaela's death the Nobles are trying to rebuild their lives with their young son Zachary, 23 months.

"Living at a high pitch of stress for a long time meant that we saw the ugliest sides of each other.

"Michaela's life put so much stress on our relationship that we don't know whether we are going to come through this as a couple."

But the Nobles say they are anxious for hospitals and parents to learn from their experiences and ensure that children like Michaela get only the treatment vital for their survival and with the minimal of pain and maximum pain relief.

"Looking back at her life the one lesson that we learnt very clearly from the transplant and the six and a half weeks she spent on the ventilator suffering, is that sometimes death is far better than life."