LOSING A BABY:
Today I have two beautiful girls that have fetal valproate syndrome. Yet when I think back to my two daughters and my son and today I know that this information was out there in the sixties. Every time another child died I would ask the doctor was it related to my medicines, (I don't know why I thought this) each and every time I was told no. - My children were born in the late eighties - now I know that those doctors knew. I have met other OACS mums that have had the same experience; I am shocked that we were never told. The issues this raise is huge.
There is little information upon the experience of losing a baby or child, people do not like to touch upon this topic so there is often much unsaid and too few to talk with. We all have experienced the expectations that becoming pregnant can bring as we imagine the place that the coming child will hold within our lives. It is therefore, devastating when one loses the baby or child they have yearned for. The unexpressed tears and the gnawing ache in the depths of your being.
There is a higher rate of miscarriages, neonatal and still born children, and therapeutic abortions to those mothers that take anti-epileptic medication. The fact is that many of these children are simply not viable, or too greatly damaged by epilepsy medication to survive. I love my girls to bits, they are the world to me; but if I had known that my previous children had died because of the medicine I had taken, I could have used an alternative AED. I don't understand why they did not tell me. Surely all these lose should have added up to a bigger picture???? A bit of creative thinking and a doctor may have noted potential mums of FACS children???
In some cultures the grieving mother and family are supported within the community. Unfortunately in the UK this is something that is rarely addressed by others within the family unit. Counselling can be provided, and there are some good supportive organisations too but it is difficult, even hurtful, when those about you avoid the subject, to the point of obvious avoidance, leaving you their isolated by your grief.
The more into the pregnancy you go the greater you become invested in the experience of having a child; I always felt that I knew each and everyone one even before they were born - I could tell you all about their personalities. This is not an uncommon experience, and one many mums will recognise.
Once the child is born, you begin to know them, and they become an intricate part of your life. It is difficult to imagine the feelings that occur when you come home to an empty nursery, or the post-natal checks you still have to receive. There are further potential problems that can occur, asociated with having a baby such as mastitis; how I remember the poor midwife coming out to check me over.
If the child has lived for any time; even as a neonatal child there is also the process of registering both the death and birth. So many times I come across these documents, and my photos, and remember them. I also remember the baby cemetery; it was a lovely gentle place to sit, it was perhaps the only place I can truly grieve. There are so many other challenges that can occur that seem to eke out the whole experience.
Author: An anonymous mum
Fetal anti-Convulsant Syndrome does not just affect the children that are born with a disability. It can also affect the loss of a child. At OACS we understand that there are times death is a sad part of the experience of FACS. We are not grief counsellors, but there are those here that have moved through the experience of losing a child. OACS is here to support ALL experiences of Fetal Anti Convulsant syndrome.