Deborah's Story:

Epilepsy became a part of my life when I was born; I had not given enough oxygen.  I died a few times and this caused some brain damage.  The human body is amazing; it healed by re-routing the neural pathways so that I was seemingly okay.  

 

After my first epileptic fit I was put on sodium valproate when I was about 14.  At the time the doctors were desperate to get me off it.  I spent a one term in hospital, this process continued when I finished my education and I spent another six months in hospital, and it was found that at that time I was only able to tolerate sodium valproate.  

 

Until 1995 all I had been told; too many times, any children would have a 10% - 12% likelihood of having Spina bifida, and I was encouraged not to be concerned.  It is terrifying to have an epileptic fit. To feel your body be so completely out of control.  Experiencing life threatening situations, and the painful recovery afterwards.  My epilepsy has never been in full control so the fear of changing medicaton after trying so many times in hospital, left me terrified. I guess it might have been with some relief that I was told that it was unlikely that I would have a child effected.

 

My first two babies were born early and classed as neo-natal deaths; I held them in my arms as they died; even today I know that there is no pain likes this sort of experience.  After their autopsies I was told that they were too badly damaged to have survived, even if they had been born at term.  I later had a late miscarriage; again I was told that she also would also have been too disabled to survive at full term.  I now know that this sort of experience is not uncommon.

 

Both my girls were born in the mid-nineties.  They are both so perfect, and I love them so much. My eldest is disabled in very different ways to her sister.   She was born with two holes in the heart;  Her APGAR was 5/10, she had jaundice, When she was little a weak oesophagus meant that she was sick so many times a day I had to carry a bowl around with me. Diagnosis’s of learning difficulties, autistic spectrum disorder, communication problems, hypertonia, physical malformations, club foot, neuralgia,and asthma.  The secondary effects of the drug has meant that she has had 10 ops on her ears.  She has chronic bi-lateral cholesteatoma with complications,  this will be an issue she will have all her life.  Tuille phenomenon (causes nausea, dizziness, echoing etc.),  she is now very hard of hearing, hyperacusis, tinnitus   are also problems that she lives with.  She is a self-taught lip reader and does BSL.  Because of epilepsy I had difficulty with BSL so I sign to her and she talks to me, when she is not using her hearing aid.   I also trained as a lip speaker, and managed to get on what was the only level two deaf awareness course in the UK that year, this really helped me to understand her world.

 

Her younger sister  has a milder form of Asperger’s and has developed coping techniques, but in an unfamiliar situation and she falls into a major panic.  She has poor muscle tone, and the classic FVS dysmorphic facial features. She was born with a number of cysts on her brain, and a cranial malformation at the top of her spine, just slightly too small to paralyze her.  She has to wear splints – both leg and foot, as well as do exercises daily.  She has a form of benign tumour, that has once been operated on, on her foot. Like many of the children she has mental health problems.  She also lives with chronic migraine, her digestive tract is weakened, she blanks out for large blocks of time, despite all of this she is doing level three health and social care: Level three suppporting indiviudals with learning difficulties.  She also volunteers as a helper at a local inclusive theatre project, volunteers for a scout group, attends St Johns Ambulance and is the youth representative of  OACS  and a trustee, giving a voice to the children within OACS, a role which has given us parents many insights.

 

I have since learnt that if you have one child effected you have a 55% likelihood of having others.  I am lucky that I only care for two children,  there are those that care for families with a number of disabled children.  The strain can be too much for a relationship, my husband left me when I was pregnant with my eldest daughter, losing three children and facing  a fourth is a difficult fear to live with.  It probably did not help that I spent this pregnancy in hospital.

 

Both my youngest daughter  and I are active campaigners.   We both attended the meeting with Norman Lamb, which has resulted in real-time action.    We also attended the 'APPG in parliament on thalidomide and other tetragenic drugs including sodium valproate'.  We also gave evidence against sodium valproate at the recent PRAC hearings.  Since then I attended a meeting with the NHS with the intention of creating stronger lines of communication to the patient recieving sodium valproate.

 

Author: Deborah Mann

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