I want a public inquiry into epilepsy drug that harmed my babies

27 Feb 2013 15:51

Whitefield mum says she wasn’t warned of side-effects and manufacturer claims medics should flag up risks

Anthony Pooler
Emma Murphy with, from left, children Lauren, Kian, Chloe, Erin and Luke

A mum is calling for a public inquiry into an epilepsy drug she took while pregnant which she claims has led to her five children suffering physical and development problems.

Emma Murphy, from Whitefield, is spearheading a drive to raise awareness  of the dangers of taking Epilim for women and girls of child-bearing age.

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.

Emma, 32, who was diagnosed with epilepsy when she was 12, has five children aged three to nine with 40-year-old husband Joseph.

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.

Emma, of Richmond Close, 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. Thankfully, it has made us stronger. We believe this is a real scandal because Epilim was introduced in 1973 yet GPs are still not alerting women to the dangers of taking it if they’re of child-bearing age.

“It’s one of the best drugs to control seizures but we believe thousands of children have been born with birth defects and go on to have development disorders as a result of their mothers taking it while pregnant.

“The big problem is that women still aren’t getting the advice before or during pregnancy even though this drug has been around for 40 years. I want to know why I was never told of the risks when I was pregnant.”

Researchers at Liverpool University published a ground-breaking report this month which found that children exposed to Epilim in the womb were more likely to develop neurodevelopmental disorders.

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.”

Anthony Pooler
Emma Murphy

Doctors and midwives told me to keep taking Epilim
by Emma Murphy

“Accepting that a prescription drug has affected the health of my five children is something I have to live with.

I was prescribed Epilim at the age of 12 after being diagnosed with epilepsy. It is one of the best drugs on the market to control the condition, but the effect it can have on the unborn baby is a different matter.

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.

Call it a mother’s intuition, but I soon realised something was wrong with my children.

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.

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. Yet awareness in the medical profession 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.”

             

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Signs of Autism

Autism has many signs and characteristics. Every child is different and Autism can present itself on the mild end of the spectrum but also on the severe side. Below are some of the many signs a child MAY be Autistic. Does your child have any of these traits??

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My Newspaper Feature – FACS SYNDROME

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Knowing and living with the fact that a prescription drug described by my GP, has affected the health
of my 5 children is something I will always have to accept and live with.

The Government seem to focus on the dangers of smoking, alcohol and recreational drugs in
pregnancy. What about prescription drugs? Prescription drugs are not a choice for ladies in
pregnancy, they are prescribed for a reason whatever it maybe. Its all well and good focusing on
smmoking, alcohol and recreational drugs, awareness wise it is a good thing, however they are a
choice. A conscious choice the lady has taken upon herself, prescribed drugs are not.

I was prescribed the drug Epilim aged 12 after being diagnosed with Epilepsy. For people with
Epilepsy, Depression, Bipolar, Migraine, Pain Relief etc Epilim is one of the best drugs to control
these conditions. However the effect is has on the unborn baby is a different matter. A medicinal
drug I was prescribed and at no point throughout my pregnancies was I warned of the dangers of
what Epilim could do. An action in todays era is shocking. This is a position ladies up and down the
country are facing and have done since Epilim was introduced onto the market in 1973.

Back in 2005 the MMr scandal caused huge controversy as it was THOUGHT that having the MMR
injection to babies MAY cause Autism. Last week a medical journal was published categorically
stating that if a baby is exposed to Epilim during pregnancy it will cause “Neurodevelpomental
Disorders”. Figures from our medical team that 48,000 children have been exposed to Epilim and
40% of those children will have both physical and cognitive long term conditions. This will result in
the child then being diagnosed with FACS Syndrome, and other conditions associated with it.a

Use of the drug?

With regards to my care during my pregnancys about my Epilepsy, questions would be asked as to
how I was with my epilepsy? Was I having seizures? However at no point throughout consultations
was I advised about the affect Epilim could do. This would be discussed with midwife, anti natel
consultant and the advice given back was always to continue with the dose of Epilim and to increase
my dosage of Folic Acid. This was advice given by fully qualified GPs, Midwives and Consultants who
have studied all areas of their field….who am I to question advice given. I had full trust in them,
after all they are the professionals.

How did I feel when I realised it was Epilim??

Call it a mothers intuition, the older the children were getting I always knew deep down something
wasnt right. Comments were always made as to their faces…. there eyes looked chinese or there
cute button nose, something that really annoyed me. This I know now is a symptom of FACS – Facial
Dysmorphic Feature. Developmentally they were always late in reaching milestones particularly
when it came to speech. During this time I had been diagnosed with depression and whenever I
would bring up the fact something didnt seem right, it was a case of “Emma you have depression,
theres nothing wrong” Making me feel as though I was a neurotic mum imagining things. Constant
crying all day wih the babies, taking them too hospital to see why they were crying so much….”Its
just Colic” Raising my concerns with health visitors, the babies getting frustrated and banging there
heads off the floor in Tantrums “Its the terrible two’s” Constantly getting brushed off. Finding out
it was actually the Epilim, was a mixture of both relief – I knew I wasnt going mad or imagining it but
complete devastation knowing I had taken the medication and it had caused these difficulties with
my children.

Awareness

Awareness within the medical world needs to be highlighted more. Taking the children to
appointments to find that most clinicians are not actually aware of FACS SYNDROME is still to this
day very annoying. On every appointment with the children we would always bring a very basic
booklet for the Dr to look at explaining what this condition was. It was like Groundhog day on every
appointment. When a Dr is asking you the parent what the medical condition is, frustration is not
the word. If Drs were not aware of this, would ladies on this drug be?? With that I decided to use
the social network site Twitter to try and raise awareness and to see if any other parents were facing
the same thing. I then decided to talk more about it, and formed my blog, just talking about the
children, posting pictures and my thoughts Amazed by the response I had and finding that still to
this day ladies are not aware of the effects Epilim is having on their babies, a very scarey thought.

Each year the drug company who make Epilim, profit continuously. In 2011 they made 388 MILLION
euros by this one drug. They are totally aware of the effects Epilim has on babies as they have paid
for various studies to be carried out. I fully understand that they are a business and it all comes
down to money but how can they seriously allow this drug to affect babies in such a devastating
way. Under the FACS Syndrome umberella approximately 5000 babies are born each year. Why
should it be the taxpayer paying for the care of these children it should be the drug company. As a
trust our next step is to carry on raising awareness within Government. Our EDM (Early Day Motion)
has just been accepted so this will back up and strengthen our case to hopefully get the Public
Enquiry that is needed, to stop this continuous rise in affected babies.

Make It Count

Make It Count

TWITTER : Emma4facs

WEBSITE: www.facsa.org.uk