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8 June 2014

Warrior Mum - Emma Murphy's Journey

Fetal Anti-Convulsant Syndrome. Epilepsy, Sodium Valproate.
 
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.



"All my 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."  

Champion Mum, Emma with Lauren outside 10 Downing Street





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Emma Murphy making a big difference in the world


Kerrie and Emma

I was born 1st December 1980 in Salford, Manchester. I come from a very close Catholic Irish family, the eldest of 3 children. I have a younger sister Kerrie and a much younger brother Kieran. Without it sounding like a cliché, I really did have the best upbringing.   
My mum Bernadette separated from my dad when me and Kerrie were young. My mum had 5 brothers and her being the only girl, she was the spoilt one.  
Our family was very close. Everyday we would be at my nana and granddads, all congregating the way Irish families did..in the kitchen, food was always on the go, the cassette player of Irish singer Sean Wilson playing. A really happy childhood. 
I loved school and was quite a geek. Not overly brainy but I was always wanting to please the teacher and help; loved reading, which I still do.  
Summer holidays were spent at my nanas, playing out all day long, playing kick ball, hide, curby and playing with the other kids in my nanas cul de sac. They were really fabulous times which I would go back to in a flash tomorrow.   
My mum and Nana spoilt us and Me, Kerrie and Kieran had everything. Mum and Nana were like best friends, even socialising together at bingo most nights. Their close bond was very nurturing and we children felt so loved and secure. 
When I was in 2nd year high school, my mum fell pregnant with my brother. When she told me I was absolutely mortified. The thought of my 34 year-old mum still having sex was ewwwwwwwww and the thought of having to tell my friends she was pregnant. I was in such a mood with her and I fell out with her for 2 weeks. It was a different story when my brother was born, we loved him straight away. He was just perfect.

 
Emma's Mum, Kerrie and Emma


M. What age did you develop epilepsy?

I was 12 when I started having epileptic fits. I never knew when I was having them and would normally come round after being unconscious in the hospital. Nobody in my family had epilepsy, so this was a big adjustment. People panicked and called an ambulance every time I had a fit. I can't really blame them. Seeing someone collapsing to the floor and literally raving, shaking and convulsing, changing colour as I fitted and unresponsive, must have been a distressing scene to witness. I was eventually diagnosed with Grand Mal Epilepsy which means that you literally collapse to the floor and lose consciousness. Being in high school I was really embarrassed by this. I was scared people would laugh and tease me, so there was only a handful of close friends that knew about it. I had to get into a regular pattern of taking medication. I went through a phase of not taking the tablets, which looking back was so silly, but at the time I hated the thought of having it. I was embarrassed. 

After I left school I got a job within a solicitors as a receptionist. I loved this, it wasn’t far away from my house, was easy to get to and they were wanting to train me and pay for me to go on courses, which was great. However, the epilepsy was having more of an effect on me and I was having seizures in the street. For anyone who doesn’t have this, I can't tell you the fear there is. I never get any warnings when having a seizure, so would never know when one was coming on.  After endless admissions into hospital, tests etc I was advised by my Neuro to think about giving work up for the mean time as the seizures where really taking hold. The medication was stabilising my seizures to a certain extent but they were frequent and couldn’t be predicted. I had to get used to having them and accept that this was now part of my life.


Emma and Joe

I met my now husband Joe on a night out with my friends. Joe was a taxi driver and he picked me up to drop me to meet some friends. On the end of my night out and me being very drunk I phoned a taxi and yours truly came to pick me up. I never knew Joe and me being rather vocal using the chat up line “You look like Paul Scholes (the footballer) can I have your number?” Not very romantic but it did the trick. But we had been together for maybe 3 months when I received news that would impact me for the rest of my life, and would change me as a person.
My beloved Mum had been diagnosed with Breast Cancer. The day I found out is still crystal clear. My mum had found a lump in her breast and for 9 months had been going to her GP complaining of this lump but would always dismiss her, sending her away with Primrose Evening Oil capsuales. My sister, Nana and I , in fact the whole family were completely devastated. She started Chemotherapy straight away and responded well to this. Her hair was starting to come out in clumps and I'll never forget the day she shaved her head.  

It hit me that day as its something that you cant imagine would ever happen. 

Mum was so positive in front of everyone. She wasn’t a hat wearer but wouldn’t wear the wigs she bought. She didn’t suit them and when she would go out she would wear caps. She always still wore her make up and carried on being Mum. Eventually my mum had both breasts removed and it seemed the chemo had been a success as she had been given the all clear. We were over the moon.  
 
Emma's Mum and Nan

However, within a few months she started to behave weird and one day in particular me, my sister and Joe took my mum straight to A&E. We thought she might have been having a stroke. The doctor's assessing her asked her simple questions, Who was the Prime Minister? Her date of birth? What year was it ? She didn’t know any of them. I remember asking her to answer the questions - her looking at me with a blank face. You could see the worry in the doctor's face. Admission to the hospital and tests brought news we were definitely not prepared for and still so hard to believe. My mum had 2 tumours in her brain.  
I remember being in a chemist one day not long after and picking up a pregnancy test. I don’t know why I did this as due to everything that was going on with Mum, the last thing I thought about was to have a baby. I did the test in my nana's bathroom and saw the two lines appearing. The one thing I always wanted was becoming true; I was pregnant, but the person I loved most in the world, my reason for being here, was dying. A feeling I cant describe.
Over the next few months my mums health deteriorated. Watching my beautiful Mum disappear, the glue that held the family together, just left me numb 

 

   Emma with her Mum

My mum died on 20th May aged 42. She fought till the end with such courage and determination. Completely and utterly devastated, watching my 8 year old brother and my sister Kerrie, and my nana, we were all inconsolable



My Babies

Lauren and Chloe




Chloe is 10, a beautiful, intelligent girl but very emotional. She loves to do gymnastics, dancing and just like me loves to read. She has the caring nature that my mum had.




 



 

Lauren and Mummy




Lauren is 9. She entered the world in the back of Joes taxi outside the hospital at 31 weeks and was the tiniest baby I had ever seen. She is too confident, cheeky and loves to voice her opinion.








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Luke is 8, and loves to dance body popping style.  He is funny, caring and like a typical boy loves Wrestling



http://emma4facs.files.wordpress.com/2014/03/20140311-102156.jpgn




 





Erin is 6 and a little girly girl.  She loves pink and playing with her dolls.  She is very clever and polite and loves to watch nature programmes with her dad.








Kian is 4 and is like a hurricane through the house. He loves school, to sing, dance, to virtually create mayhem anywhere…..but is fabulous







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. 
The children were all born over a period of 5 years, however, they always seemed to be ill, were never reaching milestones, had delayed speech etc.   
A pattern 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.)
I was 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.  
Then, one 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. 




M. Did people sit up and listen to you?
Finally 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
• Incontinence
• Valgus Foot
• Hypermobility
• Speech & Language Delay
• Autisic behaviour/Dyspraxia
• Athsma
• Noise Intolerance
• Deafness and more
    
All my 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.   
I never 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? 
I started 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. 

There is 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 and advice.
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.

FACS can affect a child to varying degrees ranging from dysmorphic facial features, cognitive impairments, spina bifida, cleft lip and palate, autistic spectrum etc

Sodium 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??
Basically 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.
However this 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.
M. What 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 in pregnancy.
On 16th 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 been affected.
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

https://www.surveymonkey.com/s/ZDSDNDV
But of 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.
Whilst in 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? 
Running a 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 
 

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.

Yesterday I was at the hospital with Lauren, and just the same as last week, yet again I’m feeling devastated. We were told that the Botox Lauren has to help her cerebral palsy, is no longer working and she will definitely need continuous operations. The Dr explained the procedure that Lauren will have and it doesn’t sound great. She will be in a wheelchair for between 6-8 week’s depending on how she recovers. I wasn’t best pleased. He was explaining it all in front of her as she was then crying, saying “I don’t want to have it done mum, Why me” Another question ….How do you answer?? We were both just sat hugging each other crying. Promises of magazines, treats, having visitors while she’s in hospital took away the upset for a while, but since being home, she’s asking “Do I have to have it done??” I would love to be able to tell Lauren she doesn’t have to have it and everything will be alright. Her Dad and I reassure her that things will be ok but deep down, we can’t say if it will or won’t. We know she has to have the operation. It will never cure her cerebral palsy but it’s the in between, the tears, tantrums, and the constant pain she is in, questions that as parents are very hard to handle.


On the other hand as bad as things feel at the minute, everything is happening for a reason. Whether it’s to make my children stronger for the future, or to help other children and families diagnosed with FACS the fact it may have helped one family is good. They will always have FACS SYNDROME and the disabilities/illness that come associated with that, at least I have 5 beautiful children that I wouldn’t change for the world."

M. Emma, thank you so much for sharing your story and good luck with your campaign.

FOLLOW EMMA ON TWITTER @Emma4facs

8 comments:

  1. Both heartbreaking & inspiring - Emma your babies are super gorgeous and you are an inspiration.

    I can't imagine how tough it is raising five special needs children ( I know how hard can be raising one!) and yet you still find heart space and time to help other families in the same situation.
    I'm in awe of your strength!

    Thank God for mums like you - A true warrior!

    All the best with the campaign

    Kimmie x

    ReplyDelete
  2. Both heartbreaking & inspiring - Emma your babies are super gorgeous and you are an inspiration.

    I can't imagine how tough it is raising five special needs children ( I know how hard can be raising one!) and yet you still find heart space and time to help other families in the same situation.
    I'm in awe of your strength!

    Thank God for mums like you - A true warrior!

    All the best with the campaign

    Kimmie x

    ReplyDelete
  3. Oh Emma so so sorry about your mum and your precious children :( something clearly wrong when the medical profession do not tell you the repercussions of drugs or ignore your concerns. You have a beautiful family and I can't imagine how hard it is for your children or you as mum and dad. How amazing are you and Janet raising awareness for other families, it's all about openness and transparency sadly lacking in the world of medicine and education. Such an inspiring mum dad and beautiful happy children love and hugs to you all Sophie xxx

    ReplyDelete
  4. A fabulous write up Emma! I'm looking forward to seeing you on the 18th June 2014 at the APPG meeting Chaired by Alec Shelbrooke MP to discuss raising awareness of FACS. You've worked so hard on this campaign and more parents are seeking help from FACSA, InFACT, OACS and FACSaware everyday. Best wishes. Emma x

    ReplyDelete
  5. Emma what a fabulous and dedicated mother you are, who also finds the time to advocate for epilepsy sufferers and raising awareness of the perils of such medications during pregnancy. Welcome to the Warrior Mums club :) x

    ReplyDelete
  6. Thank you everyone for your kind comments. I cant believe in todays society this is still going on. I could never sit back with 5 children affected and not do anything about it. If me speaking about my family helps just 1 lady, its been worth it. So happy to finally be in the club ::))

    ReplyDelete
    Replies
    1. Warrior Mums are delighted to have you Emma. We're all behind you so please keep us updated. xx

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