I was first prescribed Sodium Valproate in 1983 at the age of 19 years old without any information or advice from my Neurologist or GP about the hazards of taking this drug during pregnancy, and so never offered any pre-conception counselling either nor was prescribed folic acid. My top dose of Valproate was 1200mg during both my pregnancies which was upped to 2000mg after the birth of my second child due to the amount of seizures brought on by the stress.
At this time and until around 1995, there were no Patient Information Leaflets produced by the Pharmaceutical Company Sanofi, explaining any problems with taking the drug during pregnancy
There were no complications during my first pregnancy and our son was born 5 days overdue with no complications during labour either.
The problems began as our son reached only 12 hours old and began showing signs of withdrawal from Valproate. He became very jittery, sleepy, refusing feeds and was taken to the special care baby unit where he was weaned of Valproate using another anti-convulsant. We were in hospital 7 days during which time I never received explanations for his problems or pre-conception counselling should we want any more children.
During his first 12 months our son had regular check ups at the hospital but on no occasion were we told he had been given a diagnosis of Fetal Valproate Syndrome. He was a very quiet baby, very sleepy who did not show much interest in his toys. He was slow with his development including rolling over, talking, crawling and walking and by the age of 4yrs was assessed and noted to be 18 months behind his peers.
At the age of 12months he was sent to a child development unit and was their until 5 years old where he was assessed in areas such as speech and language, physiotherapy, occupational therapy and educational psychology. The assessments showed that he needed support and began his education at a Mild Learning Difficulties unit attached to a mainstream school.
Before the age of 8 years old he had had numerous operations which were a tonsillectomy, inguinal hernia and undescended testes.
At the age of 10 years he was diagnosed with Aspergers Syndrome and Attention Deficit Disorders as well as the diagnosis of Fetal Valproate Syndrome he was given at birth, and by 15 years old was given a diagnosis of Scoliosis. Due to his mental capacity he has always had support educationally, through school, college and University and is now 24yrs old with a Foundation Degree for Motorsports as cars have always been his obsession. The real test is now for him in the real world, as he struggles with life skills and understanding consequences and circumstances of his action. There have been numerous occasions where he has been taken advantage of financially, he cannot cook for himself as he gets confused when he had more than 1 instruction at a time and due to his short term memory problems, forgets there are pans on the heat.
Our second son’s problems began during pregnancy. By 16 weeks I had received 3 scans and I was sent back to my Neurologist who then told me that they were unsure if my baby was lied in a awkward position in the womb or if he had spina bifida and told I could terminate if I wish. If I had been told about this previously, or if the drug company had produced their evidence in the PIL’s I would never have been put in this position.
We went onto have the baby and when he was born the only visible thing was crossed toes. This time there were no withdrawal problems however he was kept in hospital for 7 days to ensure his health was ok. However, unbeknowns to us he too was given a diagnosis of Fetal Valproate Syndrome.
He also had the developmental problems but he also suffered all the re-current childhood illness and by the age of 5 year, before starting school had been in hospital having a tonsillectomy, grommets, a hernia operation, squint straightened.
He was also sent to the child development unit where he received a lot of attention on his speech and language, occupational therapy and physiotherapy. His education suffered terribly as a result of the Valproate and due to this became a very emotional little boy who did not understand the world around him. By the age of 7 years he had received a diagnosis of Dyspraxia due to his problems and a full educational statement which, like his brother went with him all through his educational life.
Unfortunately for him he is immature and inappropriate with most things. He doesn’t understand time, numbers and has no road sense at all even though he is now 23 years old, with a fear of animals and sudden noises, needing constant routine and explanations about the simplest things.
During their life time the family has virtually lived at the hospital, with constant appointments and operations which have caused undue stress on myself with more unneeded seizures and medications, and my husband with having to give up his work to care for all three of us with the family having to live on benefits because of it. Both boy are socially awkward and won’t go out alone to meet people of their own age group, old friends soon get forgotten and won’t be re-visited unless pushed into meeting up with them again. Niether of them have had girlfriends and have only on-line friends when playing computer games.
The affect this has on day to day family life is unbelievable, my husband and I are unable to go out alone and leave the boys at home without ensuring they have a sandwiches made ready for dinner. We have to explain well in advance of any unusual diary events which would be coming in order to stop surprises and get them ready for any sudden change in their routine, reminding them all the time about the simple things such as turning of lights, getting ready for bed, brushing their teeth etc…
The boys are both now in their 20’s and it is apparent that things are never going to get any better than this for them. Our worry now as parents is what will happen to them when we are no longer here to care for them..!