Taking epilepsy drug led to ALL FIVE of my children suffering conditions from autism to deafness
Emma Murphy, 32, has taken the anti-seizure drug Epilim since she was 12
She says doctors never told her of the risks when she was pregnant
Campaigning for greater awareness of side-effects after all five children developed physical and developmental problems
A mother says an epilepsy drug she took while pregnant led to her five children suffering physical and development problems.
Emma Murphy, from Whitefield in Greater Manchester, is now calling for a public inquiry into the treatment and wants to raise awareness of the dangers to young women.
Epilim is one of the registered trade names for sodium valporate, an anti-epilepsy drug also prescribed to people suffering from bipolar disorders and depression - but there is a risk of birth defects if taken by pregnant women.
Mrs Murphy, 32, who was diagnosed with epilepsy when she was 12, has five children aged three to nine with her husband Joseph, 40.
Their children - Chloe, nine, Lauren, eight, Luke, seven, Erin, five and Kian, three - all have physical and development problems including autism, deafness, cerebral palsy and incontinence.
Mrs Murphy said: 'It is incredibly difficult as my children each have individual needs and dealing with children on the autistic spectrum is particularly challenging. My husband and I have a good routine and we're managing but it has put a lot of pressure on us as a couple.'
But she added: 'I want to know why I was never told of the risks when I was pregnant.
'Throughout my pregnancies, I was never warned of the possible side-effects. Questions were asked about how I was getting on with my epilepsy, but at no point throughout consultations was I advised about the possible side-effects of taking Epilim on the babies growing in my womb.
'I was told to continue taking it. GPs, midwives and consultants all advised me to do so. I had complete trust in the medical profession.'
Mrs Murphy said she began to have doubts after all her children developed health problems.
Mrs Murphy said doctors did not tell her about the risks of taking Epilim during her pregnancies
She said: 'Comments were always made about their features - their eyes and noses... what I know now as facial dysmorphic features - a symptom of FACS (Fetal Anti Convulsant Syndrome).
'Developmentally, they were always late in reaching milestones, particularly when it came to speech.
'During this time I was diagnosed with depression and whenever I brought up the fact something didn't seem right, it was a case of 'Emma you have depression, there's nothing wrong'.
'I was made to feel I was a neurotic mum imagining things. When I raised my concerns, I was given the brush-off.'
She went on: 'When I discovered the link with Epilim and birth defects, I actually felt relief - I wasn't going mad after all.
'Relief mixed with sadness and devastation that had I not taken the drug the outcome could have been so different.'
Epilim is one of the most effective drugs to control epileptic seizures. However, researchers at Liverpool University published a study this month which found that children exposed to Epilim in the womb were six times more likely to develop neurodevelopmental disorders.
The researchers concluded that one in three of the children born to mothers taking Epilim has learning difficulties, low IQ and types of autism.
‘It is a huge medical dilemma,’ said Professor Gus Baker, an eminent neuropsychologist who conducted the research.
A spokeswoman for Sanofi, the pharmaceutical company that manufactures Epilim, said: 'For some women of child-bearing potential, valporate may be the only effective seizure-control medication.
'However, a decision to use valporate in such women should only be taken after a very careful evaluation between the patient and her treating physician if the benefits of its use outweigh the risks to the unborn child.
'Because of the well-known risk of birth defects, valporate has not been recommended as a first-choice agent for women with epilepsy who are of child-bearing potential. As recommended by the manufacturer, women of child-bearing potential should be informed of the risks and benefits of the use of valporate during pregnancy.
'It is important to stress that stopping any anti-epileptic medication suddenly can lead to a recurrence of seizures which may be fatal.'
However, Mrs Murphy said that awareness in the medical profession about the side-effects of Epilim is still worryingly absent.
'Most clinicians don't seem to know about FACS syndrome and to this day women are unaware of the potential side-effects Epilim could have on their babies. We urge the government to hold a public inquiry into this matter.'
Mrs Murphy founded the Independent Fetal Anti-Convulsant Trust (FACT), to raise awareness of the condition.
Campaigners estimate that 48,000 children have been born to mothers in the UK who have taken the drug since it was introduced in 1973. Of these 40 per cent - a massive 19,200 - have developed physical or mental problems.
Karen Buck's 14-year-old daughter Bridget suffers from both.
Yesterday, Sue Reid reported in the Daily Mail that Bridget is expected to die in a matter of weeks and her family have signed an instruction that she must not be resuscitated.
She has not been able to swallow solid food for months and can only be fed from a baby’s bottle.
Her brain is so damaged she has the comprehension of a toddler and has never uttered a word.
Her twisted legs are shrunken and her back is bent. She sometimes stops breathing for a minute at a time.
In March 1998 Karen took Epilim to combat her epileptic fits during the pregnancy. Her daughter has needed 24-hour care every day since.
Researchers found that one in three of the children born to mothers taking Epilim has learning difficulties, low IQ and types of autism
Earlier this month, the Daily Mail printed Carol Sarler’s heartbreaking account of her battle to get help for her three-year-old granddaughter Milly, born brain-damaged after Carol’s daughter took Epilim when pregnant.
The cases have huge social implications, says Dr Peter Turnpenny, a consultant geneticist at the Royal Exeter and Devon Hospital who has advised mothers with children damaged by Epilim.
‘It is really tough on the families who devote their whole lives to these children, some of whom never really grow up.
'The parents are worried what will happen when they, themselves, die.
‘It is a big financial burden for the country to care for them, and we know that hundreds more babies with the same neurodevelopment problems are being born each year.’
Six years ago, the law firm Irwin Mitchell began a claim for compensation against Sanofi Aventis, the drug’s manufacturer, on behalf of 100 children whose mothers say suffered birth defects because the drug was taken during pregnancy.
The case was publicly funded by legal aid through the Legal Services Commission (LSC).
But in November 2010, six weeks before the trial was due to start, the LSC withdrew funding.
‘The LSC can only spend taxpayers’ money where we believe there is a reasonable prospect of success,’ it said.
At the time, Sanofi Aventis expressed sympathy with the families but insisted it always issued appropriate warnings in its literature on Epilim ‘in line with developing scientific knowledge’.
Under the deal struck when the court case failed, the families promised not to sue Sanofi Aventis in the future, if their £3.5 million legal costs for preparing the trial were paid for by the pharmaceutical company.
Today Karen Buck is still angry about the outcome.
‘I took Bridget, in her wheelchair, to court so the drug company lawyers could see her,' she said.
'They wouldn’t even look us in the eye, and is it any wonder?’
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