I am a mother with epilepsy

The child of a parent with epilepsy is only slightly more likely to have epilepsy. The overall risk of a child having unprovoked seizures is 1% to 2% in the general population and about 6% if their parent has epilepsy.

Your child is more likely to develop epilepsy if your own epilepsy was inherited (genetic).

After your child is born, if you’re worried they might have epilepsy, talk to your doctor about seeing a genetic counselor. Remember, most children with epilepsy gain complete control over their seizures and lead normal lives.

Can I breastfeed my baby?

In general, if you have epilepsy, you can breastfeed your baby without any harmful effects to them from your breast milk. Your baby will already have been exposed to low levels of ASMs throughout the pregnancy, and their exposure from breast milk will be even lower.

For some women, breastfeeding just doesn’t work out despite best intentions. If that happens, don’t feel guilty or think you have failed. The most important thing for your baby is that you avoid stress and anxiety, and stay happy and well.

How can I reduce the risks from breastfeeding?

• Keep the baby next to your bed at night, and feed him or her in bed with you. But for safety, don’t keep the baby in your bed while you’re asleep.
• If you’re worried that sleep deprivation might trigger seizures, you can pump breast milk in advance or use formula, and your partner or another family member could do some night feeds.
• If you take your ASM once a day, you could try taking it at the start of the baby’s longest sleep period. This is usually after the bedtime feed.
• If you take your ASM more than once a day, you could try waiting until after you have breastfed and then take it immediately. That way, the levels will be at their lowest when you breastfeed.
• Continue to take your prenatal vitamins if you breast-feed and plan to have another baby.

Information on joining lactation registries

Joining pregnancy and lactation registries can play a vital role in improving the health and safety of mothers and babies. These registries collect valuable information on how medications and treatments affect pregnancy and breastfeeding, helping healthcare providers offer safer advice.

Why it’s beneficial:

• Enhance safety: the data gathered helps identify potential risks and benefits, contributing to safer care for everyone.
• Support future mothers: information from registries informs better healthcare practices, improving outcomes for mothers and babies.
• Empower your decisions: access to up-to-date information helps you make informed choices about your health.

How you can help:

• Consider joining: if you’re pregnant or breastfeeding, participating in a registry can be a simple way to contribute to better understanding.
• Share with others: let others know about the benefits of these registries to help expand their impact.
• Being part of a registry is a way to support a healthier future for women and children. Your experience could make a difference.

Will my seizures change after I have a baby?

It is hard to predict how seizures might change after you have a baby, although it is known that seizures can occur more frequently or can be more severe during the postpartum period (after giving birth). Your body will have been stressed while you were in labor and giving birth. Moreover, with a new baby to care for, you may be feeling excited and anxious.

It can also be difficult to find time to rest as caring for your new baby takes up most of your time. Getting enough sleep is important for anyone with epilepsy – remember, sleep deprivation may increase your risk of having a seizure.

In addition, your hormones are changing once again as you return to your pre-pregnancy state and your doctor may need to adjust your ASMs.

Despite the scenes of perfect family life we see in advertising and on social media, the reality of life with a new baby can be full of mess and stress. You may feel you can’t cope at times and that’s okay. Ask for help – it doesn’t mean you’re a failure. It just means that you’re the same as every other new mother, and need some help and support.

How can I reduce my risk of seizures?

• Take your medication as prescribed – that’s the single most important thing you can do.
• Ask your doctor to monitor your medication levels regularly in case they need to be adjusted.
• If your medication level was increased when you were pregnant, make sure you know the symptoms of high drug levels in your system so that you can alert your doctor.
• Get as much help as you can from your partner, family and friends so that you can have time to rest, and try to sleep when the baby sleeps.
• Try not to worry if your home is not as neat and tidy as you would like it to be – babies take up a lot of time. It’s temporary and happens in every home when a new baby arrives.
• Try to find time to relax and take care of yourself while someone else watches over the baby. It is also important to exercise and maintain a healthy diet.
• Share your concerns. If anything is bothering you or you have a problem, your health care providers are there to help you. The maternity unit at the hospital is a good source of advice.

How can I reduce the risk to my baby if I have a seizure?

Baths and feeding

• Always change your baby on the floor and not on a changing table.
• Use sponge baths to clean your baby when you’re alone and only use a baby bath if someone is with you.
• Make sure that you always use the straps on any baby chair or rocker. Of course, this applies to all parents, not just those with epilepsy.
• When you’re feeding your baby, try to sit on the floor. Use cushions or pillows for comfort and softness.

Carrying and going outside

• Many women use cloth baby carrier slings to carry their baby around and to help with bonding. If you don’t tend to fall when having seizures, you could try using one.
• Never carry the baby in your arms or a sling if you’re holding something hot, ironing, cooking, using a hairdryer or hair straightener, or using any other electrical equipment that could cause harm if you were to have a seizure.
• Never smoke while holding a baby and don’t smoke near your baby.
• Outside, use a suitable baby pram or stroller with good brakes, and consider whether it is safe for you to carry your baby in a sling outside.

For many parents, having a new baby brings with it worry, apprehension, and even fear. This is completely normal. New parents can feel like this whether or not they have epilepsy, and it can take a little time to adjust emotionally.

You may experience feelings of depression in the first few days after giving birth, but most of the time this reduces once your hormones settle. One in ten women, however, find postnatal depression can last longer. No matter what, remember it is not a failing on your part if you don’t feel as joyful in motherhood as society tells you you should. It is more common than you think, and help is available.

If you’re feeling sad, irritable or agitated, or are suffering from insomnia, talk to your family, friends and your healthcare practitioner, as you may have postnatal depression. Support is important for all new mothers, and it’s important you know you’re not alone and that you won’t feel this way forever.

You can get pregnant again just three weeks after having your baby.

Women with epilepsy need to plan every pregnancy well in advance to manage ASMs and other factors, so it’s really important to be aware that you could get pregnant very soon after giving birth.

Furthermore, breastfeeding and the hormonal changes in the first few months after delivery can make contraception more complicated.

Make sure you talk with your doctor and your obstetrician to identify the best contraception method in the weeks after the birth. This is especially important if the contraception method you have been using is hormonal.