Ahead of the Back Bench Business Debate at Parliament on 19th October, we have been asked to collate parents stories of how taking Sodium Valproate in Pregnancy has impacted their children’s and their lives. Here is Caroline’s story :
I was diagnosed with epilepsy aged 14, and was prescribed Epilim. I got pregnant with only warnings from my GP or midwife that there was a ‘slight chance’ of my child being born with Spine Bifida or Downs Syndrome.
Bronwyn was born in 1996, she was a healthy baby, no problems at birth.
As she grew from baby to toddler, she greatly missed her milestones, she wasn’t beginning to say words, wasn’t crawling, or walking, wasn’t playing as a child her age would be, She had tests for clicky hips, came back fine, I will never forget the health visitor basically branding me a bad mother, and sent me to a play specialist to ‘teach me’
As the years went by, she struggled with walking, she was given Pedro boots, for flat feet, nursery and school insisted she was a shy child, and a daydreamer, she didn’t have many friends, didn’t like to talk to people, wasn’t great at schoolwork, and outside home, lived in a little shell of herself. She also suffered with severe constipation, and still does.
Around the age of 8, she was diagnosed with petit male epilepsy.
I was adamant it was more, something wasn’t right, I kept speaking to doctors and teachers, but they assured me, she’s fine.
When she was 16 I saw a BBC Programme . The penny dropped. I was gobsmacked. And I researched it, and made connections. And armed with a list, I went to see my GP. Bronwyn was refused mental health referral several times, before I got to my wits end, and pushed with ‘I will go to primary trust of something isn’t done’ finally, she went to CAHMS.
At 16, she took her GCSE’S, and she didn’t do well getting ungraded, G’s E’s and F’s, with 2 C’s in Art and I. T (the two things she loves)
At 17, she was diagnosed with Learning difficulties/disabilities, Dispraxia and social anxiety disorder, but they couldn’t do an autism diagnosis, because by the time they had done all this, she was 18, and not under child mental health services. But I was just pleased that finally she could get some support.
Then I came across Janet & Emma in 2014. And I can’t explain how shocked and upset I was to learn that it could be down to the medication I took.
We pushed time and time again to see a geneticist, I was told by neurologists when asking for a referral, ‘what do you think you are going to get out of this’ and ‘we don’t do referrals’ finally getting an appointment with Dr Turnpenny, who confirmed, she has Fetal Valporate Syndrome, and also with microcephaly, mild lordosis, hypermobility and low muscle tone.
Life has been a struggle for Bronwyn, to not receive the proper support or diagnosis early in life, she hasn’t had the best start, but she has tried, and tried in everything she does, and does it with a smile. (but sometimes she loses her temper, growls, sulks, gets very angry but it doesn’t last so much now she has grown up) But for anyone that gets to knows her, they know she is the most caring and considerate person they have ever met, and the most funny and quick witted.
To me she is an angel, and I wouldn’t change her for the world… Because she wouldn’t be my little bronfringe.
She said to me not long ago, ‘I wouldn’t want to be ‘normal’ I like my mad head’
But it hurts me to say, she doesn’t and won’t know any different all down to the pills I took for my seizures.