- Emma Jones gave birth to her son Riley at just 22 weeks and three days
- Guidelines say doctors shouldn’t treat babies born less than 24 weeks
- Study shows there is a huge risk of the child developing severe disabilities
- Her petition has been signed by 2,759 people and back by Welsh politician
A woman who gave birth to a severely premature baby has created a petition seeking to have medical guidelines changed after doctors refused to treat her child.
Grieving mother Emma Jones gave birth to her son Riley at just 22 weeks and three days in December last year.
However, current medical guidelines issued by the British Association of Perinatal Medicine recommend that doctors do not attempt to resuscitate babies born before 24 weeks, due to the extremely high risk of developing serious disabilities.
Grieving mother Emma Jones with her partner Chris Goodger. Emma gave birth to their son Riley Goodger at just 22 weeks and three days in December last year
Riley died in the early hours of December 29, 2013, just 93 minutes after Ms Jones had given birth to him at Cardiff’s University Hospital of Wales.
Ms Jones, from Cardiff, claims that he was breathing on his own and would have survived had medical staff intervened.
But doctors and nurses refused to treat the 480g child because he was born nine days before it is considered acceptable for doctors to try and keep premature infants alive.
She has now collected thousands of signatures on a petition calling for a change medical guidelines so babies born 22 weeks into pregnancy are not left to die by hospital staff.
She told Wales Online: ‘He wasn’t crying but I could see he was breathing – and his heart was beating through his chest wall.
‘But no care could be provided for him even though he was living.
‘I was incredibly tired after just going through labour but my mother, father and partner tried everything they could to get the staff to change their minds.
‘They were begging because they knew what had happened with my previous son and they felt it couldn’t happen again. It was heartbreaking.’
‘In fighting this, I’m also conflicting with abortion guidelines, which makes things even more difficult.’
Ms Jones has handed in the 2,759-signature petition into the National Assembly of Wales’ Petitions Committee to demand changes are put in place to help babies showing signs of life.
Riley died in the early hours of December 29, 2013, just 93 minutes after Ms Jones had given birth to him at Cardiff’s University Hospital of Wales
The 23-year-old supermarket worker said she wants paediatricians to review and weigh every baby born after 22 weeks so parents and clinicians can make informed decisions based on their chance of survival.
Ms Jones had an operation in May on her cervix to improve her chances of giving birth after the 24-week cut-off period.
She added: ‘I don’t want any blame on the hospital for what they did.
‘My anger lies with the guidelines. Every baby should be treated on their individual condition. I believe if staff had treated my baby he’d still be alive today.’
The latest set of guidelines drawn up by the British Association of Perinatal Medicine in 2008 state that if a child is born at any stage less than 23 weeks, it is ‘considered in the best interests of the baby, and standard practice, for resuscitation not to be carried out.’
The guidelines are based on a 1995 EPICure study of all babies born in the UK during that year, which reported that only two children born at 22 weeks survived, with one going on to develop severe disabilities.
The BAPM guidelines go on to state that should a baby be born between 23 weeks and 23 weeks and six days ‘a decision not to start resuscitation is an appropriate approach’, although this may be re-considered in exceptional cases.
There were 241 babies born prematurely at 23 weeks in 2000, with only 26 surviving. Of these, one later died and fourteen were reported to have disabilities by the age of five.
Doctors and nurses refused to treat the 480g child because he was born nine days before it is considered acceptable to try and keep prematurely-born infants alive
However, babies born at 24 weeks had a higher chance of survival, and guidelines recommend that ‘resuscitation should be commenced unless the parents and clinicians have considered that the baby will be born severely compromised’.
In the 1995 study, 66 per cent of the 313 babies born at this age died, while half of the survivors were found to have a moderate or severe disability at six years old.
Disabilities often include cerebral palsy and an inability to walk, low cognitive scores, blindness or profound hearing loss.
Those babies born at 25 weeks had considerably greater chances of survival and it is considered ‘appropriate to resuscitate babies at this gestation and, if the response is encouraging, to start intensive care’.
Of the 424 babies born at this gestation period in 1995, 48 per cent later died, although 27 per cent of the survivors had no identifiable impairment.
Along with a steady rise in birth rates, there are increasing numbers of older mothers and those using fertility treatments – two groups of women who are more likely to have premature babies.
Current medical guidelines issued by the British Association of Perinatal Medicine recommend that doctors do not attempt to resuscitate babies born before 24 weeks
According to data from 2011, those born alive at 27 weeks have an 87 per cent chance of surviving, at 28 weeks it is 92 per cent and at 29 weeks, 95 per cent.
However, Lindsay Whittle, Plaid Cymru AM for South Wales East, said: ‘Emma’s baby son was breathing for 93 minutes on his own and I believe every effort should have been made to give him a chance of life.
‘I admire Emma’s courage and back her campaign to help others in the future.
‘I will be writing to the Health Minister Mark Drakeford to ask for a meeting to discuss the current regulations concerning the cut-off period following a birth.’
Riley’s death was the second time Ms Jones has lost a child. He son Tyler was stillborn in 2012.
The Welsh Government said the care of extremely pre-term babies is ‘extremely challenging’ and reviewed regularly as medical advances are made.
A spokesman said: ‘Health boards follow guidance from the Royal College of Paediatrics and the British Association of Perinatal Medicine.
‘The current guidance does not prohibit resuscitation of babies at any age.
‘The decision to attempt resuscitation should be made by the clinical team in partnership with the parents, informed by the overall clinical situation and not just the gestational age of the baby.
‘But the guidance does reflect the sad reality that babies born under 23 weeks have very low chances of disability-free survival and this knowledge is a key part of the clinical decision-making.’
A spokesman for the University Hospital of Wales declined to comment.
Read more: http://www.dailymail.co.uk/femail/article-2855958/Devastated-mother-premature-baby-died-doctors-refused-treat-born-just-22-weeks-petitions-medical-rules-changed.html#ixzz3KgZfL8zx
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