Bereaved mother's campaign against medical guidelines that allow premature babies to die
A mother who watched her premature baby die when doctors refused to help him has condemned medical guidelines which said he should not be saved.
By Laura Donnelly, Health Correspondent
Published: 12:00PM BST 05 Sep 2009
Sarah Capewell lost her premature son a year ago. Sarah Capewell gave birth to a baby son when she was 21 weeks and 5 days into her pregnancy. Her pleas to doctors and midwives to admit the newborn to a special care baby unit were rejected.
Staff at James Paget Hospital, in Gorleston, Norfolk, told her that if her son Jayden had been born two days later, at 22 weeks, they would have tried to help him.
She is now fighting for a change to British medical guidance which says intensive care should never be given to babies below 22 weeks gestation, and rarely to those below 23 weeks.
She has created a website, Justice for Jayden, campaigning for changes, which has already attracted 5,000 members, including scores of women who have suffered a similar plight.
Medical guidance for NHS hospitals says the low chance of survival for babies born below 23 weeks means they should not be given interventions which could cause suffering.
It is backed by research showing that despite improvements in the survival chances of babies born beyond 24 weeks, there has been little change in the viability of those born more prematurely.
A national study last year found 16 per cent survival at 23 weeks, compared with 47 per cent one week later.
A separate study of 150 babies born in the Trent area at 22 weeks last year found none survived, though latest annual figures record three cases surviving in 2006.
However, the bereaved mothers who have joined Ms Capewell's campaign say that the figures are distorted because they are often refused or discouraged from seeking intensive care for such newborns by doctors.
They say however small the chance of survival, every baby should be given the chance of life.
When Miss Capewell, 23, from Great Yarmouth, became pregnant last year she was apprehensive.
She had previously suffered five miscarriages, four of which had occurred since a difficult pregnancy and birth of her daughter Jodie, now five. Doctors had previously warned that given her history, the chance of further miscarriages was high.
However, when a 12 week scan showed the foetus had a healthy heartbeat, clinicians became more optimistic.
Soon after, Miss Capewell began to bleed heavily. She was admitted to hospital, where she was found to have suffered a placental abruption. Although she lost a lot of blood, the foetus remained healthy, tests showed.
For the next few weeks the hospital continued to monitor her closely, admitting her again after further bleeding at 18 weeks.
Midwives told her "We just have to get you to 22 weeks", which she later learned referred to the national ethical guidance by the Nuffield Council on Bioethics, restricting interventions for the youngest babies.
Last October, at 21 weeks and four days, she went into labour.
Miss Capewell says her increasingly desperate pleas to assist her baby were met with a brusque response from doctors, who said she should consider the labour as a miscarriage, rather than a birth.
When she implored a paediatrician: "You have got to help" he responded: "No we don't".
After asking doctors to consider his human right to life, she claims she was told: "He hasn't got a human right, he is a foetus".
Doctors and midwives said the child was likely to be stillborn, and that even if he was alive he was likely to be deformed, with skin peeling off.
As contractions continued, a chaplain arrived to discuss bereavement, and planning a funeral.
Miss Capewell said: "I was sitting there, reading this leaflet about planning a funeral and thinking this is my baby, he isn't even born yet, let alone dead."
In the early hours of the morning, Jayden was born. To his mother's astonishment, he stretched out his arms and legs.
A senior midwife found his heartbeat and described him as "a little fighter," Miss Capewell said.
Nevertheless, her pleas for a cot to be found for her son in the special care baby unit were rejected.
Midwives said they had asked senior doctors, who had refused permission. Two hours later, Miss Capewell's son died in her arms.
The controversial guidance limiting care of the most premature babies was drawn up by the Nuffield Council on Bioethics in 2006, and strengthened by advice published by the British Association of Perinatal Medicine last year.
Miss Capewell said: "There are thousands of women who have experienced this. The doctors say the babies won't survive, but how do they know if they aren't giving them a chance?"
The youngest children to survive in this country were Alex Franks, born at exactly 22 weeks in 1999, in London, and Millie McDonagh, who was the same gestation when she was born in Manchester, in 1997.
Neither is reported to have suffered serious health problems.
The world's most premature living baby is Amillia Taylor, who was born at 21 weeks and 6 days in Florida, in 2006.
Prof Jane Hawdon, a consultant neonatologist at University College London Hospital, which has had several successful births in the 22nd week, said she supported the national guidelines, but said "extreme sensitivity" was needed to handle such situations.
"There are reams of evidence to support the guidance. The research hasn't shown any substantial improvements for births under 23 weeks," she added.
"The feeling among professionals is that we've probably got as far as we can, and for every week of prematurity the outlook gets worse."
James Paget University Hospital Foundation trust said it could not comment on individual cases, but said it followed national guidance.
