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My baby was left to die

PUBLISHED: 09:45 08 September 2009 | UPDATED: 14:57 03 July 2010

A Norfolk woman whose premature baby died in her arms after doctors refused to help him has launched a campaign to change medical guidelines on when infants should be given intensive care.

A Norfolk woman whose premature baby died in her arms after doctors refused to help him has launched a campaign to change medical guidelines on when infants should be given intensive care.

Sarah Capewell, 23, gave birth to her son Jayden when she was 21 weeks and five days into her pregnancy - two days before the 22-week gestation limit under which British medical guidance says intensive care should never be given.

Baby Jayden cried out and lived for two hours, long enough for Miss Capewell to compile a poignant album of photographs, but her pleas for her newborn to be admitted to the special care baby unit at Gorleston's James Paget University Hospital (JPH) were rejected.

“When I asked about my baby's human rights, the attitude of the doctors seemed to be that he did not have any. They said before 22 weeks he was just a foetus,” she said.

Left with feelings of anger, hurt and guilt that her son had not been given a fighting chance and his life had not been valued, Miss Capewell, of Crown Road, Yarmouth, vowed to campaign for change and created a Justice for Jayden website.

Since its launch in January, three months after Jayden's death, she has been overwhelmed to have received support from 260,000 women worldwide, including many with heart-breaking stories that have left her in tears.

And she has been further heartened by the response of Yarmouth MP Tony Wright, who last night said: “When a woman wants to give the best chance to her baby they should surely be afforded that opportunity.”

He will shortly be meeting her for a full briefing and pledged to call for a thorough review of medical guidelines to see if there was a case for changing them.

Miss Capewell, who lives with her grandparents and five-year-old daughter Jodie, had a history of miscarriages and after bleeding heavily 12 weeks into her pregnancy with Jayden, had to be closely monitored by doctors.

She was rushed into hospital by ambulance at 21 weeks and her waters broke at 21 weeks and three days.

“Because I had not reached 22 weeks, they did not allow me injections to stop the labour or steroid injections to help mature the baby's lungs,” she said.

Miss Capewell was told the baby was likely to be stillborn and as her contractions continued, a chaplain arrived to discuss bereavement and planning a funeral.

She said: “When he was born, he put out his arms and legs and pushed himself over. A midwife said he was breathing and had a strong heartbeat and described him as a 'little fighter'.

“I kept asking for the doctors but the midwife said, 'they won't come and help, sweetie. Make the best of the time you have with him'.”

After Jayden lost his fight for life, Miss Capewell said she had to argue her right to receive birth and death certificates which meant she could have a proper funeral.

The medical guidance for NHS hospitals, limiting care of the most premature babies, was drawn up by the Nuffield Council on Bioethics in 2006. It says intensive care should never be given to babies below 22 weeks gestation and rarely to those below 23 weeks.

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.

However, Miss Capewell said: “After Jayden's death, I looked into other cases and I could not believe that one little girl, Amillia Taylor, is perfectly healthy after being born in Florida in 2006 at 21 weeks and six days - and Jayden was heavier than her.

“There are thousands of women who have experienced this. The doctors say the babies won't survive but how do they know if they are not giving them a chance?”

She said she had heard heartbreaking stories of babies who lived as long as five days in such circumstances.

She said: “Women who went through it 10 years ago have phoned me up in tears. You can't get past it because no one tried.

“You feel you let your baby down and you are left with that guilt every single day.

“You feel you should have got out of that bed, you should have gone to another hospital.”

A spokesman for the JPH said they could not comment on individual cases. Like other acute hospitals, they followed national guidance from the British Association of Perinatal Medicine regarding premature births.

She said: “We are always sorry when we hear that a patient has concerns. In all of these cases, we would encourage the patient to contact us directly so we can discuss any concerns they may have and take further action, wherever appropriate.”

Leading national expert Dr Jane Hawdon, consultant neonatologist at University College London Hospital, said she supported national guidelines but said “extreme sensitivity” was needed to handle such situations.

“There are reams of evidence to support the guidance. The research has not shown any substantial improvements for births under 23 weeks,” she said.


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