By Vanessa Allen and Andrew Levy
Last updated at 8:53 AM on 10th September 2009

Doctors left a premature baby to die because he was born two days too early, his devastated mother claimed yesterday.

Sarah Capewell begged them to save her tiny son, who was born just 21 weeks and five days into her pregnancy - almost four months early.

They ignored her pleas and allegedly told her they were following national guidelines that babies born before 22 weeks should not be given medical treatment.

Enlarge   Sarah Capewell, mother of Jayden Capewell

Battle: Sarah Capewell is fighting to have guidelines about caring for very premature babies changed

Miss Capewell, 23, said doctors refused to even see her son Jayden, who lived for almost two hours without any medical support. 

She said he was breathing unaided, had a strong heartbeat and was even moving his arms and legs, but medics refused to admit him to a special care baby unit.

Miss Capewell is now fighting for a review of the medical guidelines. 

Sarah Capewell and her daughter Jodi

Heartbreak: Sarah Capewell with her daughter Jodi, five

Sarah Capewell is fighting for new guidelines on when infants should be given intensive care after her premature son Jayden (right) was refused treatment

Medics allegedly told her that they would have tried to save the baby if he had been born two days later, at 22 weeks.

In fact, the medical guidelines for Health Service hospitals state that babies should not be given intensive care if they are born at less than 23 weeks.

The guidance, drawn up by the Nuffield Council, is not compulsory but advises doctors that medical intervention for very premature children is not in the best interests of the baby, and is not 'standard practice'.

James Paget Hospital in Norfolk refused to comment on the case but said it was not responsible for setting the guidelines relating to premature births.

A trust spokesman said: 'Like other acute hospitals, we follow national guidance from the British Association of Perinatal Medicine regarding premature births.'

Miss Capewell, who has had five miscarriages, said the guidelines had robbed her son of a chance of life.

James Paget Hospital

Short life: Miss Capewell's son Jayden died two hours after he was born at James Paget Hospital in Gorleston, Norfolk, in October 2008

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".'

She cuddled her child and took precious photos of him, but he died in her arms less than two hours after his birth.

Miss Capewell, who has a five-year-old daughter Jodie, went into labour in October last year at 21 weeks and four days after suffering problems during her pregnancy.

She said she was told that because she had not reached 22 weeks, she was not allowed injections to try to stop the labour, or a steroid injection to help to strengthen her baby's lungs.

Instead, doctors told her to treat the labour as a miscarriage, not a birth, and to expect her baby to be born with serious deformities or even to be still-born.

Treasured memories: Pictures of baby Jayden's feet and hands

She told how she begged one paediatrician, 'You have got to help', only for the man to respond: 'No we don't.'

As her contractions continued, a chaplain arrived at her bedside to discuss bereavement and planning a funeral, she claims.

She 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.'

After his death she even had to argue with hospital officials for her right to receive birth and death certificates, which meant she could give her son a proper funeral.

Justice for Jayden: His mother is campaigning to change the law

Justice for Jayden: His mother is campaigning to change the law

She was shocked to discover that another child, born in the U.S. at 21 weeks and six days into her mother's pregnancy, had survived.

Amillia Taylor was born in Florida in 2006 and celebrated her second birthday last October. She is the youngest premature baby to survive.

Miss Capewell said: '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.

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

Miss Capewell has won the support of Labour MP Tony Wright, who has backed her call for a review of the medical guidelines. He said: 'When a woman wants to give the best chance to her baby, they should surely be afforded that opportunity.'

What the medical guidelines say...

Guidance limiting care of the most premature babies provoked outrage when it was published three years ago.

Experts on medical ethics advised doctors not to resuscitate babies born before 23 weeks in the womb, stating that it was not in the child's 'best interests'.

The guidelines said: 'If gestational age is certain and less than 23+0 (i.e at 22 weeks) it would be considered in the best interests of the baby, and standard practice, for resuscitation not to be carried out.'

Medical intervention would be given for a child born between 22 and 23 weeks only if the parents requested it and only after discussion about likely outcomes.

The rules were endorsed by the British Association of Perinatal Medicine and are followed by NHS hospitals.

The association said they were not meant to be a 'set of instructions', but doctors regard them as the best available advice on the treatment of premature babies.

More than 80,000 babies are born prematurely in Britain every year, and of those some 40,000 need to be treated in intensive care.

The NHS spends an estimated 1 billion a year on their care.

But while survival rates for those born after 24 weeks in the womb have risen significantly, the rates for those born earlier have barely changed, despite advances in medicine and technology.

Medical experts say babies born before 23 weeks are simply too under-developed to survive, and that to use aggressive treatment methods would only prolong their suffering, or inflict pain.

The guidelines were drawn up by the Nuffield Council on Bioethics after a two-year inquiry which took evidence from doctors, nurses and religious leaders.

But weeks before they were published in 2006, a child was born in the U.S. which proved a baby could survive at earlier than 22 weeks if it was given medical treatment.

Amillia Taylor was born in Florida on October 24, 2006, after just 21 weeks and six days in the womb. She celebrated her second birthday last year.

Doctors believed she was a week older and so gave her intensive care, but later admitted she would not have received treatment if they had known her true age.

Her birth also coincided with the debate in Britain over whether the abortion limit should be reduced.

Some argued that if a baby could survive at 22 weeks then the time limit on abortions should be reduced.

The argument, which was lost in Parliament, followed a cut to the time limit in 1990 when politicians reduced it from 28 weeks to 24 weeks, in line with scientific evidence that foetuses could survive outside the womb at a younger age.

However, experts say cases like Amillia Taylor's are rare, and can raise false expectations about survival rates.

Studies show that only 1 per cent of babies born before 23 weeks survive, and many suffer serious disabilities.

Here's what readers have had to say so far. Why not add your thoughts below, or debate this issue live on our message boards.

The comments below have not been moderated.

Oh I am annoyed to be coming back to this thread. I can't help but.

So to go back to my previous post - I am a midwife and former NICU nurse, have a lot of experience in these areas. Please read my last post!! I know both personally AND professionally how hard this can be. I had a child born prem myself at 21weeks. There is no way my baby could have survived, I was distraught, still am but there is a reason why they dont - their bodies just arent capable. There is a reason why medical staff will help a baby after 23 weeks. If any of you ahd any idea behind the Anatomy and physiology of a human body your opinions would be so so different. The A&P if a growing baby inside the womb is a interesting thing, so maybe some of you should read that and come back to this. There is a reason someone has 40 weeks of pregnancy on average.
Lots of emotion here, I understand that but please stop bashing the medical profession, and the NHS.

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Wow, Dave, that is pretty presumptuous. People the world over believe in defending life. The comments here are providing support for the UK WOMAN who believes her rights were violated. Everyone's voice is needed in this kind of situation. Since when is it anyone's right besides the parents' to determine what is "medically best" for their own child? I think if I were a premature baby and it were possible to ask me whether I wanted doctors to possibly cause me some more suffering with the possibility of saving my life, I would surely say yes! Human beings are not like dogs - we can't decide to put them to sleep because they are not likely to make it. And that is what is going to continue to happen if we don't defend those who can't speak for themselves. Next to go are the elderly and those with intellectual disabilities who either can't speak or whose decisions are not trusted to be informed or reliable.

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When my son was born at 23 weeks' gestation my doctor said to me, "if you want us to try and save your baby we will make every effort to do so. It's up to you." Thank God I was given that choice. My one and only child is now a happy, healthy 18-year-old with the world, and his whole life, in front of him.

If a 23-week-old could be saved EIGHTEEN years ago, there is no reason that baby Jason couldn't have been saved today. My heart goes out to his mother.

It's very random that an ocean and an inferior approach to healthcare are the only things that separate my son from Jason. "There but for the grace of God go I"... and YOU.

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If ever there was a argument for lowering the time limit on abortions surely this awful story demonstrates that change is much needed. How can anyone say that its ok to terminate a child that is so obviously a formed being. I am pro choice, everyone is entitled to make a mistake, but there is no way the legal limit for abortion should be what it is. 12 weeks is the latest an abortion should be allowd, that is plenty of time to decide what you want to do, if a pregnancy needs terminating.

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The primary difference between the American Healthcare System and most of the European and Canadian models is one of underlying philosophy.

The Americans have always focused on keeping the patient alive and getting the patient well. Regardless of efficency and performance, this is the goal.

The Nationalized models focus on cost. When this goal is fully implemented, people's lives become expendable because of costs.

That is the reason for the grass roots, democratic uprising in the USA.

Love to all.

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Inhumanity.

I'm none too thrilled with the thought of reckless medical lawsuits. They make real medicine too expensive.

But before you even get to lawsuits, you have to have doctors willing to try. These doctors ought to be... (the things I'm feeling they ought to have done to them don't fall within the realm of Christian love).

I'm so very sorry for this lady and the horrific pain she must be going through due in no small part to the medical structure she had to work with.

Let the doctors be doctors, I say. Get every one else and their noses out.

I'm so very thankful that, at least for now, we don't have to deal with such atrocities here in America. They perform every service necessary and imaginable to heal and save and patch up and fix. And then they send the bill. After they've done all they can.

The bill can be horrific too, but can you compare the cost of a bill to the joy of having the child? Or at least of having tried?

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