Dark Side of Medicine™

One of the things I have learned from my own experience is how difficult it can be to look backwards.

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My daughters have Fetal Valproate Spectrum Disorder (FVSD), caused by exposure to sodium valproate during pregnancy. But when I was pregnant, I wasn't keeping detailed records of medicines, doses, illnesses, appointments or what was happening at different stages of pregnancy.

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Why would I? To me, the baby I was carrying was perfect. I wasn't looking for something that might be wrong, and it had never occurred to me that the ordinary details of my pregnancy might one day become important to understanding my child's health.

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Even when my daughters' disabilities began to emerge, I still didn't think about their lives in that way. They were my girls, they were receiving good healthcare, and we dealt with each difficulty as it arose. Why would I think that information about my pregnancies might be important?

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It was only when the Fetal Anti-Convulsant litigation began that the idea of looking backwards really took root. Even then, I was thinking about the information for legal reasons, rather than as something that could help us understand my daughters' health.

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Years later, those details became incredibly important.

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The Fetal Anti-Convulsant Support Group ran holidays for families, and I attended with my daughters. There I met other mothers whose children could have been the sisters, brothers or even twins of mine. The reality that my children had been affected by valproate really hit home.

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Despite the seemingly good care my daughters were receiving, it also became clear that our local doctors knew relatively little about what being affected by valproate might mean for their health as they grew.

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I found myself trying to piece together a story from old, fractured medical records, memories and information that had been recorded for completely different reasons. I began to realise how valuable it would have been to have one simple record that had travelled with us from pregnancy onwards.

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This becomes even more important when nobody knows what will happen next. Recognising that a baby may have been affected by a teratogen does not necessarily tell you what that child's future will look like. There is still so much we do not know. For me, that makes bringing information together and keeping it over time even more important.

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That experience is what led me to create the Teratology Resource Series (TER).

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I wanted it to be wider than medicines

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Although my own journey began with sodium valproate, I did not want TER to become a valproate resource.

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There are many things that may affect development during pregnancy. Sometimes there is a known teratogen. Sometimes there may have been a medicine, illness, infection, chemical or environmental exposure that only becomes significant later.

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But TER is not only for situations where an exposure is already known.

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There may be a suspected genetic condition, or something that simply cannot be explained today but may be understood in the future. Our knowledge is constantly changing. What we can identify and understand tomorrow may be very different from what we know today.

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Having information cannot provide all the answers, but it can give a child a better chance of understanding what is happening if questions arise later.

And hopefully, for many families, there will be no harmful exposure at all.

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A child may begin to experience physical, developmental, neurological, learning or other difficulties and nobody yet knows why. A genetic condition may be suspected. Tests may be taking place. Or parents may simply have that feeling that something is different and want to start keeping a record.

TER is for those families too.

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Recording the journey rather than finding the answer

I don't want parents using TER to feel that they have to work out what caused their child's difficulties.

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That isn't its purpose.

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I wanted to create somewhere to keep the pieces of information that can so easily become scattered across medical records, school reports, appointment letters and our own memories. There are very few places where all those different pieces of a child's story come together. I think there should be.

Pregnancy is the beginning of that record, not the end of it.

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As children grow, new things can emerge. Something that seemed unimportant at two years old may look very different when considered alongside something that happens at ten, sixteen or twenty.

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Looking back at my own daughters' lives, I can see just how important that bigger picture can become. Sometimes something quite small changes the picture. New information emerges, our understanding evolves and the journey takes a different path.

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That is why I believe it is important to keep the story rather than only recording the answers we have today.

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Something I wish I had been given

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If somebody had handed me something like TER when I was pregnant, I could not have known how important it might eventually become.

That is really why I created it.

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Not because every exposure will cause harm.

Not because every disability has an environmental or genetic explanation.
And not because a parent should have to become a researcher.

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I created it because information that seems ordinary today may become important tomorrow.

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Whether there is a known teratogen, a possible exposure, a suspected genetic condition, an unexplained disability, or simply questions that have not yet been answered, TER provides somewhere for that story to be kept.

I cannot go back and create the record I wish I had for my own pregnancies and my daughters' early lives.

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But I can create something that may help another family keep theirs.

I hope it helps.