From being young I always had one aim in life……… to become a mum. My mum brought my sister and brother up great, I had a regular babysitting job when I was 13 -15 for 2 lovely little children and I absolutely loved it. I then went on to become a Nursery Nurse. For most women it is what they want in life, a loving family.
Over the past few months in meetings my campaign has attended at Government, it has been suggested that women with Epilepsy/ Migraine and Manic Depression and taking Anti Epilepsy Medications (AEDs) in particular Sodium Valproate (Epilim – as this is the most harmful prescription drug out of all AEDs during pregnancy)
“ Women should have informed choice, Sterilisation should be offered to women on Valproate to avoid pregnancy remembering that you do not have to become pregnant to be a parent?”
So in other words, women with Epilepsy, Migraine, Manic depression shouldn’t be able to give birth naturally. Sat in these meetings I have literally had to refrain myself from saying my opinion, that these words are absolutely unethical and for many women with these conditions an insult.
Sodium Valproate came onto the market in 1973, and at the time it was only liscensed for the treatment of Epilepsy. Before it was licscensed Drug Manufacturer Sanofi knew that the effects of Epilim on a growing foetus would harm the baby. Journal papers released in 1983 was the 1st time it had been noted publicly that
“The most frequently occurring defects in children exposed to anti convulsant therapy were cleft lip palate, skeletal abnormalities, congenital heart disease, and MENTAL RETARDATION”
As the years have progressed more emerging data has been published about the effects of Sodium Valproate on a baby highlighting the dangers. Sodium Valproate IS a good drug to control Epilepsy and for many women is the only drug that will help this life threatening condition, however with regards to a baby, it is the worst.
I fully agree that women on AEDs should have the choice to make an informed choice about their pregnancies. I was never given this option as I was never told of the effects of Valproate, and this has and is the case for thousands of women. Maybe if I had been given an informed choice my children wouldn’t know be living with the conditionFACS. Every person on the land has a human right to have children. It is what keeps the world going. By having an illness, it doesn’t have to restrict you from this choice. The fact that women have epilepsy/ migraine/depression is devastating if you have these conditions, but it is also apart of life that you get on with, adapt and live with. It is imperative to this informed choice that women are given the correct and upto date medical information about AEDs. Results from Our National Survey has stated : ) Did you discuss getting pregnant with your doctor before conceiving?
- Yes 36.11%
- No 58.33%
- Unsure 5.56%
So clearly if women are not getting the correct information, how are they supposed to make that informed choice and this is down to the lack of information provided by the Department of Health
I myself, have epilepsy and am diagnosed with depression, I also have 5 beautiful children and whilst it can be
It is absolutely unethical and immoral to suggest that because women have epilepsy/ migraine /bipolar they should be sterilised. There are many drugs to control these conditions, some work , some don’t, and they work differently on each individual. Trying different medicines is a testing time as it exposes your medical condition and can either send it worse or find the right balance. My Neurologist currently will not put me back on Epilim until I am sterilised, because of the risks, so Im currently taking Keppra in which I am having Epileptic fits for fun, but I have also not tried the other drugs. Sterilisation should be the last resort, When you have tried every drug and weighed up your options, maybe then it is something to think of, but offereing a lady sterilastion 1st time without exploring these options would be unethical.
When women are wanting to start a family this sometimes becomes something that dominates there life. So for ladies with these conditions to then be told you cant have a baby…… absolutely mindblowing. Maternal mothers want the whole package, to be pregnant, to bond with their baby while its growing, to give birth and see that beautiful baby when its born and share these experiences with family. Just because a lady is on AEDs in particular Valproate the suggestion of adopting children rather than naturally become a mum in my view is an insult. Sodium Valproate and other AEDs do harm the baby, but that is dependant on dosage and the ladies metabolism and other contributing factors. Our campaign know there are women who have gone on to have healthy beautiful children. At present there are 131,000 ladies in Britain with Epilepsy alone. Since 1973 20,000 babies have been affected by Epilim ALONE, 40% of those affected 20,000 have development disorders such as ASD and its estimated that 500 babies are born each year with disabilities caused by Epilim. Based on these figures it is evident that not all babies are affected.
Now aged 33 I can proudly say I am so lucky to have the dream of a husband and a family. Yes Epilim has affected my children, but I wouldn’t change or have them any other way. Everyone is entitled to an opinion, and it may shock you that the opinion stated is NOT from a Professional body, but when that opinion is demorilising and insensitive, for all the women we support and represent it does have to be publicly expressed.
What is your opinion? Do you agree with the comment stated? Are you on these medications, or just a member of the public……… FACSA would love to hear from you
For more information on our campaign please click the link https://emma4facs.wordpress.com/epilepsy-pregnancy-and-pills-campaign/