We fight to improve the lives
of everyone affected by epilepsy

 

Catherine

Looking back, despite our research, we were quite naive when planning to have our first child. No one was overly concerned that I was taking sodium valproate. At 20 weeks, I had the normal scan - that came back clear - and we looked forward to the birth of a healthy child.

At 10 days over Matthew’s due date I was induced, and Matthew was born 31 hours later. At birth he did not breathe straight away, was floppy, and needed help to start his life.

For the next six months we felt that everything was fine. However, the doubts began to start and we knew that Matthew was not developing as he should. After reading a news article about anti-epileptic drugs and pregnancy, things started to click into place. I saw my GP and told him of my fears.

We were referred to a genetics consultant who diagnosed (when Matthew was just 16 months old) fetal anti convulsant syndrome (FACS). This was the start of a very long journey. Matthew has three types of epilepsy, medical problems and complex learning difficulties. He has a Statement of Special Need but attends mainstream education.

A few years after Matthew was born, I found out I was pregnant. We were shocked! I saw my GP and she arranged for me to see my epilepsy consultant within 24 hours.

We spoke about the risks of FACS on our unborn child. The latest data available suggested that levetiracetam [the anti-epileptic drug I started after Matthew was born] was safer to take in pregnancy than sodium valproate.

During this pregnancy, we had frequent [antenatal] appointments, an informed midwife, a 20 week specialist scan and extra scans including a 4D scan. This was to look for specific facial features associated with FACS.

Charlotte was born after a quick labour. She was crying, pink and healthy. Charlotte fed well, developed normally, and was free from any problems associated with FACS.

Matthew and Charlotte are very different children, but have both enhanced our lives so much. If anyone had ever told us that we would have a child with special educational and health needs, we would have thought we couldn’t have coped.

Matthew has made us more confident in ourselves and very adept at following education and health procedures in order that he has all the help he needs. He is a wonderful boy, who has learning and health problems, but is well behaved and liked by everyone. We feel confident that whatever happens in the future, he will find his way in the world, supported by us, and make a valuable contribution.

Before your pregnancy discuss the latest data from the Pregnancy Register with your epilepsy specialist. Also ask your epilepsy consultant about the services available to women with epilepsy in pregnancy at the hospitals in your area. And finally, ask to be referred for preconception counselling, to discuss all your opinions.

Once you’re pregnant, you can ask to be referred to a specialist obstetrician who knows about your medication and pregnant women with epilepsy. If you are at higher risk of having a baby with malformations, ask for more frequent monitoring scans

Catherine
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