Caroline grew up believing that having epilepsy meant she wouldn’t be able to have children, after a few chance remarks from her great-grandmother. She never discussed this with her mother, who could have reassured her, and it wasn’t until she had her first serious boyfriend, at the age of 19, that her better-informed GP put her right during a discussion about contraception. However, when Caroline became pregnant at 27, she didn’t feel entirely comfortable until after a session with a genetic counselor, which finally reassured her that her baby had only a slightly higher chance of having epilepsy than any baby.
Some women may still grow up believing that epilepsy cuts out the chance of a family of their own. This goes back to an ancient belief that all epilepsy is inherited – which may in turn be linked to equally old superstitions about epilepsy being contagious.
Most women with epilepsy have a slightly higher chance of their baby having epilepsy compared to the rest of the population – about 1 per cent according to Living well with epilepsy and other seizure disorders By Carl W. Bazil. Epilepsy is rarely inherited, though a predisposition to epilepsy may be passed on. Seizure threshold is part of a person’s genetic make up, and may be passed on to children, so to some extent everyone with epilepsy has a genetic element to their condition, but this is very variable. A few types of epilepsy carry a small risk of future children inheriting epilepsy; for example, if pre-conception screening has picked up tuberous sclerosis, a genetic condition which causes epilepsy, there is a 50 to one chance of it being passed on to children.
There are some other rare types of epilepsy which can run in families. If more than one member of your family has epilepsy, it is worth telling your GP about the possibility of the epilepsy being genetic in origin.
Depending on your type of epilepsy and family history, you and your doctor may want to consider genetic counselling, which, while it won’t make hard and fast predictions, can help you work out the likelihood of your baby inheriting epilepsy. So, when preparing for your doctor’s appointment, it would be helpful to gather together as much information about your family medical history as possible.
Getting the attention you need
In a recent survey by Epilepsy Action, it was found that many women don’t get the medical attention they require simply because they don’t speak out. The survey found that one quarter of the women had not discussed their pregnancy with anyone. It is true that pre-conception care is a relatively recent advance in epilepsy treatment, and some older family doctors may not be fully aware of its implications. However, information and advice is available from a second opinion, a specialist or a support group.
-Make a list of points to discuss with your doctor as suggested above.
-Ask specifically for referral to an epilepsy specialist if you have not already seen one. Epilepsy organizations may be able to suggest local specialist centres.
-If your own doctor cannot help, seek a second opinion. You should inform your current GP that you are doing this.
-Contact an epilepsy organization such as Epilepsy Action or the National Society for Epilepsy for further advice and support.
– At your ‘booking in’ visit or your first antenatal visit you will need to inform your midwife that you have epilepsy. It is a good idea to explain what your seizures are like – their nature, length, any pattern to them, and how often they happen. Other points to mention are your medication and whether your partner has epilepsy.