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How I coped when things didn’t go to plan

These diaries were written in 2012 by mums with epilepsy. Lots of mums-to-be have found them really helpful and reassuring.

For up-to-date information about epilepsy and having a baby, go to Epilepsy Action's advice and information pages.

Sadly, not all pregnancies go to plan. Some pregnancies don’t go to full-term and end in a premature birth (before 37 weeks) or a miscarriage. Other people need assistance to try and achieve a pregnancy. How do you cope? This is how Jennifer coped.

Our reproductive department was incredibly supportive

Jennifer: Using the natural intrauterine insemination technique IUI [a type of fertility treatment] it took us three years to conceive first time around. But I miscarried at three months. 
We feel lucky to have fallen pregnant again, a year later (again using natural IUI technique). This time we went full term and I gave birth to a healthy, happy baby boy.

The reproduction unit that we ended up dealing with were incredibly supportive. They followed my lead in how I approached my epilepsy. I viewed it as an inconvenience. I wouldn’t let it hold me back in any of my plans. But I acknowledged my limitations, and any likely impact on children we would be lucky enough to have. We also had numerous ultrasound scans. A very early one (six weeks) as we'd had reproductive assistance and anyone going through that unit is given a six week scan.

Given our earlier loss, the hospital were lovely and gave us a 10 week scan for our sanity to prove the little bean was still alive and well. We then had the normal 12 and 20-week scans.

Our tale of two pregnancies

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.

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