I'd never heard of Fetal Anti-convulsant Syndrome (FACS) until I 'met' Emma Murphy from Salford, on Twitter. Emma has epilepsy and for some time has been taking Sodium Valproate (Epilim), an anti-convulsant medication to control her seizures. At the time of meeting Emma I was shocked at hearing how her children had been left with some form of disability because of the effects Sodium Valproate had on her unborn babies during pregnancy.
Annoyed by the drug company's indifference to the damage it's inflicted on her children and let down by the medical profession, Emma felt a justified sense of alarm and betrayal and set about gathering facts from other parents whose children had also been harmed by the drug Sodium Valproate - and now there is no stopping her.
Like most warrior mums, Emma doesn't just want to fight her children's corner, she wants to represent all the parents whose children were left with some form of disability because they took Sodium Valproate when they were pregnant, unaware the drug would most likely harm the child they were carrying.
This is Emma's story.
Champion Mum, Emma with Lauren outside 10 Downing Street
|Emma's Mum, Kerrie and Emma|
Emma with her Mum
|Lauren and Chloe|
|Lauren and Mummy|
M. So you're
a very busy Mum with 5 children close in age, would you please tell us when you
first became concerned about their development?
When I was
younger I always imagined being a Mum would be simple, be so easy. Growing up
it always looked great as my mum did such a brilliant job. I wanted the same for
my children. I never in my wildest dreams would have imagined that my children
would be born with such disabilities it affects their every day life.
were all born over a period of 5 years, however, they always seemed to be ill,
were never reaching milestones, had delayed speech etc.
was emerging after each child, comments would be made about their facial
features, which would drive me mad. I had lots of arguments with my nana
over this as she was so blunt she would just say it. (Sadly my nana passed away
three years ago so was unable to see her suspicions confirmed.)
convinced something was wrong. It didn’t seem right that all my babies were
showing signs of illness, delayed milestones etc.. I was devastated by this and
was very quickly diagnosed with depression. Having lost my mum the GPs, Health
Visitors, family etc thought I was being paranoid, over protective Mum when I
would voice my concerns over the kids.
I was always
being reassured the children were fine and they would catch up. I felt as
though I was banging my head against the wall. Nobody would listen to
me. Constantly being told the kids are fine Emma, they will catch up,
it’s the terrible twos. Something wasn’t right.
When I had
Chloe I got a job in a nursery and continued to work when I had Lauren and Luke
and even trained as a nursery nurse. Life was hard though. I had so many
hospital appointments with the kids and with Joe working on the taxis at night
I'd come in from work as he be leaving for his night-shift.
In the end
it was too much trying to juggle everything and so I gave up my job to look
after the children full time.
day I saw on the news a lady talking about the dangers of Epilim in pregnancy,
how whilst pregnant it could affect the baby, which could result in the baby
having a condition called FACS (Fetal Anti Convulsant Syndrome). I was
speechless watching this. I knew there and then, that my children had this
condition. It was as if a light had been switched on, everything the lady was
saying was exactly what I had been saying for years. I rang the news
immediately and was put in touch with Janet Williams.
people sit up and listen to you?
after months of tests and doctors appointments, my children were diagnosed with
FACS SYNDROME – the medicine I was prescribed HAD affected my babies. As well
as the diagnosis of FACS, my children also went on to obtain diagnosis of:
Facial Dysmorphic Features
• Cerebral Palsy
• Valgus Foot
• Speech & Language Delay
• Autisic behaviour/Dyspraxia
• Noise Intolerance
• Deafness and more
doctors and midwives knew I was on Epilim. Joe and I decided from my 1st pregnancy
to have my antenatel care at the hospital as that was where my Neurologist was
based. On every appointment they would ask about my dosage, were my seizures
being controlled?? How was I feeling? Not one person in the
medical/pregnancy world told me that taking this medication would affect the
baby I was carrying.
questioned the doctors, to me and Joe, they were the professionals and I was
the patient. I wasn’t the one who had trained to be in the medical world.
I hadn’t seen my Neuroligist since I was 15 so my care was always administered
by my GP. It was always a case of getting repeat prescriptions and when I
had a seizure I would be admitted into hospital.
M. Would you
like to tell us about your campaign?
Emma4facs Twitter Campaign in April 2011 basically looking for families who
were going through what I was with the children. inFACT was established
in November 2012, founded by myself and colleague Janet Williams.
another organisation FACSA (Fetal Anti-Convulsant Syndrome Association) which
is a sister organisation to In-FACT, both working together to ensure children
with a diagnosis of fetal anti-convulsant syndrome get the best care, support
FACSA are a
not for profit support group providing information, support and help to
children and their families diagnosed with the medical condition FACS-SYNDROME.
affect a child to varying degrees ranging from dysmorphic facial features,
cognitive impairments, spina bifida, cleft lip and palate, autistic spectrum
Valproate (Epilim) was predominantly prescribed for Epilepsy, however it is now
used for different illnesses.
One of the
many conditions Sodium Valproate is used for is Neuralgia: This basically
means nerve pain which can occur through injury, compression and inflammation
and in some cases Arthritis.
For a few
months now my sister has been quite poorly, presenting with symptoms of very
severe headaches, muscle pain to the extent where she can’t mover her neck,
bend down, basically limiting and restricting her movement. She has now
been seen by her GP and it seems the cause of this is Neuralgia. She now
has to undergo a brain scan to rule other things out.
Why is this
relevant to FACS Syndrome??
the pain relief treatment for Neuralgia is Sodium Valproate (Epilim). She
is still very young and does want to try for another baby. Therefore
posing the risk of when she eventually gets pregnant and being prescribed pain
relief the percentage of her child having FACS is relatively high. My
sister is at an advantage as she knows the effects of FACS Syndrome as it has
affected her 5 nieces and nephews. So when it comes to being prescribed
the medication she can talk this through with her Dr and try an alternative.
isn’t the case for thousands of women out there. They, like myself, will
believe what there GP is prescribing them is good and effective. It may
be good to treat the condition but on the other hand if the lady is planning a
family, this could have devastating effects on the baby and could result in the
baby being born with FACS.
If you know
anyone with Neuralgia, and are of childbearing age do make them aware of this
and to speak to their medical team.
headway has the campaign made?
On 22nd July
we were invited to the MHRA (Medicines and Healthcare Product Regulatory
Agency) by Dr June Raine – Director of Vigilance and Risk Management of
Medicines Division so as you can imagine we accepted this invite. We were
very sceptical going into the meeting as to how they would approach the
topic. However they asked us our agenda….what did we as a Trust want to
discuss, such as the findings of our survey, which was recently
published. We put forward 5 major points that we felt were relevant and
amazingly they have agreed to touch on every point. The meeting today
lasted 2 and a half hours and by the end of it we had achieved everything that
we felt needed from MHRA and more. The impression we got from the meeting
is that they are now fully aware as to the extent of the damage Epilim can do
August both Janet and I then attended a meeting at MHRA (Medicines and Health
Regulatory Agency) to talk about the issues surrounding Epilim in
Pregnancy. In that meeting we brought up the issue that a warning should
be circulated to the public about the effects of Epilim on the unborn
baby. It was also agreed that day that approximately 20,000 babies some now
adults have been affected by this one anti- convulsant medication.
I am pleased
to say that MHRA have issued an update stating that Epilim DOES affect the
unborn child. This has focused in the media many times. It has now been
confirmed by the Governing Body who control medicines in Great Britain (MHRA)
that since the introduction of Epilim in 1973 an estimated 20,000 babies have
Due to this
Epilim is also being reviewed by the European Medicines Agency and myself and
Janet (INFACT) are representing all ladies in Britain who are on AEDS and
giving evidence. We are asking ladies with epilepsy who are on these
medications to complete our survey as this will be part of our evidence
course our ultimate goal is compensation for ALL children (not just our own) an
estimated 20,000 in Great Britain diagnosed and affected by FACS. Also
national awareness so that ladies have the knowledge about the medication she
is taking BEFORE becoming pregnant. For us both at In-FACT this means we
have finally been recognised and accepted by MHRA (a Government led body) and
NICE. The months of lobbying MPs, endless emails and in depth discussions
and consultations have finally paid off and at last will finally be able to
make a difference to a ladies pregnancy.
We have been
very very busy behind the scenes. The awareness the programme brought
about FACS was great as it was informing patients who are on Epilim NOW who
haven’t been informed the dangers of the drug and how it would affect the baby
if a mum was trying. The sad thing we found was the amount of ladies who
did get in touch, ladies who have never ever been warned about the drug, the
effects it would have on their children, ladies who are on it now and not been
told and are left in a position that they don’t know what to do. Whilst
the work we are doing is great as it is informing the public about FACS, it is
also heartbreaking as we are passing on the information that is going to devastate
a person’s life. Mums who have been on the medicine for years whose children
are now in their 20s and 30s and it’s only just clicked after watching the
programme. Ladies who are on Epilim for a specific reason who are trying
for a baby, yet they are now hearing the medicine they depend on will harm
their babies future.
London we met up with the lovely Sue Atkins, Parent Coach for This Morning.
She has years of expertise with children and is now renowned
internationally for her work, dedication and expert knowledge. Sue has been
following our Twitter Campaign and we are pleased to announce that she agreed
to become our Ambassador helping mothers and their affected children.
M. How on
earth have you achieved so much when you have 5 young children under 10 and
under at home?
National Campaign is not an easy task particularly when there are so many
avenues to consider, and also when we are still running day to day lives with
our husbands and children. When we formed INFACT we started from scratch with
nothing. No contacts, families, equipment etc. We worked on an Agenda with The
Thalidomide Campaign Team on how we could achieve our goals the way they did.
Up to this day we have achieved everything that was written and agreed upon that
day and achieved 12 months ahead of the timescale set.
M. Emma, I'd
like to finish with a post from your blog which I'm sure only paints a tiny
picture of what you're family are going through. FACS/inFACT
• Cerebral Palsy
• Valgus Foot
• Speech & Language Delay
• Autisic behaviour/Dyspraxia
• Noise Intolerance
• Deafness and more
The Emotional part of being a mummy"Erin is 5. She has always been loud, bubbly, cheeky…..a fab little girl. We never saw the signs of her having trouble with her hearing. She never complained of her ears being sore, she would never be picking or prodding them. She would often repeat her questions but Erin being the cheeky little girl she is, we presumed she was messing about. Having been told this week she is practically deaf has really come as a devastating blow. I remember when we were told Lauren had Cerebral Palsy, I was shell shocked, it feels the same this time round. Within the space of a couple of months she has gone from being vibrant and happy to withdrawn, teary and frustrated. “Mum, my ears won’t let me hear” How do I respond to that?? The Truth is at the time I couldn’t. Even though we have been told she will need hearing aids, and technology is fabulous today, it still doesn’t take away the fact that my little girl has hearing damage that will affect her all her life. With all the kids having FACS syndrome and various health needs, you might think we are used to different diagnosis and it should get easier, but it doesn’t. If anything it’s getting harder. At the moment we are waiting to be seen by audiologist to have Erin fitted for her aids, so in the meantime, we are having to talk louder and directly to her face. This has also impacted on her pronouncing words. As she can hardly hear, some of the words she’s hearing she is saying wrong ie Lauren…. she says “Rauren”. Using sign language is helpful. I’ve never done this course before, but for simple things like “cup” “food” “tired” it is helping slightly, so it will be looking like maybe sign language is the way forward too. But raising my voice for Lauren doesn't help my other children who have noise intolerance.
FOLLOW EMMA ON TWITTER @Emma4facs
PANORAMA - THE TRUTH ABOUT PILLS AND PREGNANCY http://www.bbc.co.uk/iplayer/episode/b036fddg/panorama-the-truth-about-pills-and-pregnancy
What is FACS http://facsa.org.uk/what-is-facs/
FACSA - VITAL KNOWLEDGE http://facsa.org.uk/vital-knowledge/
in-FACT Independent Fetal Anti-Convulsant Trust http://facsa.org.uk/in-fact/