Carmen Rosa Galán's son is called Victor and is 15 years old. He is able to ride complicated Star Wars legos in less than an hour and leaves everyone with their mouths open with their knowledge of cars. However, Victor will have it harder in life than his classmates. She has Asperger's Syndrome and her mother reports that it is due to an epilepsy medication she took while she was pregnant (which is also prescribed to people with bipolar disorder or migraine).
Now, Carmen and two other brave moms like her try to keep this from happening to any other family. They have created AVISAV, the Association of Victims of Valpoic Acid, the compound that contains the drug that could have caused the problems suffered by their children, which in Spain has been marketed under the name of Depakine and its derivatives. As we told a few days ago, Depakine taken during pregnancy can cause serious problems in the fetus, from malformations to mental retardation or autism. Carmen tells us her story in the first person to avoid having more cases like Victor's because of misinformation.
When did you start to intuit that something was wrong with your son?
Virtually since he was born. A mother's instinct does not fail. As a baby I had a hard time making him smile, I didn't throw my arms to get him, I didn't cry when I was hungry ... Then, when I was three years old I pointed him to the nursery there they told me that my son was very intelligent but that he had a trouble. He was diagnosed with Asperger Syndrome, a form of mild autism. At that time I asked if the cause was known and they didn't answer me.
And when did you find out that it was due to the Depakine?
Well, the incredible thing is that it was a year and a half ago. In a routine review with my neurologist on the subject of my epilepsy I asked him if my son's autism could have to do with the Depakine I took during pregnancy and he told me that there were studies that related him. The next day I made an appointment with the neurologist who saw me during pregnancy and said verbatim: “We knew it was bad, but not so much. We knew it produced other things, but not autism. "
My doctor told me: "We knew it was bad, but not so much"
And if it was known, why nothing was done?
I am convinced that both the doctors and the pharmacist knew it. Look, one of the mothers who is with me in the association remembers how in the delivery room, as soon as her son was born, they already realized that the child was going wrong and heard the nurses comment: "He has taken Depakine". Both that mother and the third stopped taking Depakine a year before having their second children and both have had children without problems.
How did you feel when you got the news? Would you have preferred not to know?
A tremendous guilt, because every time I took the pill I was hurting my baby. Also in my case, if I had known I could have left the treatment safely because my epilepsy is very mild. Regarding knowing or not knowing, it hurt me at the time, but in the long run I prefer it. You can't hide your head. You have to know why. That has helped me to work with guilt.
"Knowing the truth has helped me to work with guilt"
Victor is an only child, have you given up having more children for your autism?
Well, I would have liked to have more children, but such a situation affects you all, also the life of a couple. I am separated since my son is small and one of the reasons is that my son's father did not see what was happening: he said that the child was fine, that I was too obsessed ... Besides, you ask yourself, what if I Is another problem the same?
How is life with a child with Asperger syndrome?
Well, it's very hard. Since he is little and you go to the park or the beach and you see that your son does not behave like the others, you have to be giving explanations ... Now, with adolescence the problems are different, but there are also. And that I am lucky that my son is only Asperger, a mild disorder in autism, but still, my son has some limitations: many jobs for the public can not do, his social life is very limited because he has trouble interacting with people. They are pure children, who do not understand the lie or hypocrisy of this society in which we live.
"There are many families in Spain with children with problems and they deserve to know the truth"
Why did you decide to create the association?
The day after I found out about this I started searching online and I saw that in France there are 10,000 cases, in England also, in Belgium, in Germany ... it has also been sold in Latin America and now it seems that it is joining Africa. We think that in Spain there may be at least 5,000 affected families because it has been sold the same as in France. These families have to know why their children are like this. In addition, something very serious happens that is not being said: in France they are doing studies and it is being verified that the damage continues in the second generation. Children like my son who are not too damaged and who have been able to live their lives and have children have to know that these children can also be affected.
Do you plan to ask the pharmacist for compensation?
Of course. When you have a child like this, what you think is what will happen when I am not here. How is he going to handle when he doesn't have his mother and father that, by law of life, we'll leave sooner. This is very hard, there is no money to pay it, but you can have a little more peace of mind. The three families that have started the association are going to start legal actions against the laboratory and the others that are finding out can join the lawsuit.
