Chantel Reeves was taking the epilepsy medication, carbamazepine when she discovered she was pregnant. A new review has highlighted that this is one of several epilepsy drugs which increase the risk a physical abnormality for babies exposed to them during pregnancy. Here Chantel relives the anxieties that she went through during pregnancy and explains why she is backing our Safe Mum, Safe Baby campaign
When Chantel Reeves discovered she was pregnant, she immediately made an appointment to see her doctor.
“Finding out that I was pregnant was a pleasant surprise,” says Chantel, “but I was worried about how my epilepsy and my medication would affect my pregnancy, particularly with constant changes in my body.”
Chantel was taking carbamazepine which was controlling her tonic clonic seizures and allowing her to get on with her life.
“My doctor said that I could not be moved off the carbamazepine during pregnancy because it was safer to take the drug than to risk a seizure,” continues Chantel. “I was just told to take folic acid and keep my fingers crossed.
“The thought that my medication would also be passing through my body to my baby was daunting.”
"We could not stop crying"
But when Chantel went for her 20 week scan, it was found that her baby had a thicker than normal nuchal fold on the back of his neck suggesting that he might have a chromosome disorder.
“I knew there was something wrong when the consultant was called in to look at the scan,” says Chantel. “We were taken into a side room and were told that the baby could have a range of syndromes including Down’s syndrome and Edward’s syndrome. We could not stop crying, it was a real shock.”
Chantel turned down the chance to find out more through an amniocentesis test because of the risk it posed to her baby. She knew that she wanted to keep her baby, even if he had a disability.
Months of torment and agony
“From then on I had five months of torment and agony,” recalls Chantel. “I didn’t know whether the problems were caused by my drugs but I was going through mental turmoil.
“I didn’t know whether my baby would live for an hour after labour or be born with Down’s syndrome. It caused a lot of problems with my baby’s dad and in the end contributed to the breakdown of our relationship. Mentally it was the hardest thing I’ve ever gone through in my life.
“Every time I felt the baby kick inside me, I started crying. I loved this baby so much but was trying not to love him too much as I knew I might lose him.
“It really became unbearable. Even during labour I kept thinking the baby will pass away after birth. I felt he would not survive.”
"I've got the wrong baby"
Chantel’s baby, Oliver, was delivered by an emergency Caesarean on New Year’s Day and, thankfully, was born healthy and well. But the agony didn’t end for Chantel.
After so many months of anxiety, she found it difficult to accept that her baby was fine. She was advised against breastfeeding because of her epilepsy medication and had difficulty bonding with Oliver.
“I kept taking him back to the hospital and saying ‘I’ve got the wrong baby’,” she says. “I just could not believe that he was ok. Eventually I was diagnosed with post-natal depression.”
Today Oliver is eight years old and Chantel describes him as her driving force and incentive for everything in her life. But she still worries about the effect that her epilepsy medication may have had on her son.
Oliver has suffered with food allergies from birth and struggled to take formula milk. At the age of two he was diagnosed with several food allergies and now carries an epi pen.
Chantel continues: “Oliver has never been able to eat like other children and has never tasted his own birthday cake due to the severity of his allergies. I don’t have any food allergies neither does his father, so we are unsure as to why he suffers from them.”
Chantel says she would be too scared to risk trying for another baby, fearing that she might go through all the same anxieties again.
Pregnancy should be a happy time
“Pregnancy should be a nice and happy experience, but it wasn’t for me,” she says.
“No-one has ever suggested me changing to a safer drug but even if they did, I would be very wary. I don’t want to risk having seizures again. It would mean I couldn’t drive and that would affect not only my life, but also Oliver’s. And I wouldn’t want Oliver to see me having a seizure.
“We definitely need safer, better drugs that will mean women do not have to worry about whether the medication will harm their baby during pregnancy. I so wish I could help stop any other woman going through what I went through.”
Find out more about our Safe Mum, Safe Baby campaign.
A report from the Commission on Human Medicines has shown that some of the most commonly prescribed epilepsy medications including carbamazepine, topiramate, zonisamide and phenytoin, pose an increased risk of harm to any baby exposed to them during pregnancy.
It is well established that valproate carries a high risk during pregnancy and should never be prescribed to girls and women of child bearing age unless they are part of a birth control programme.
4-5 babies exposed to carbamazepine during pregnancy are born with a physical birth abnormality. This compares with 2-3 babies in the general population.
Lamotrigine and levetiracetam are the safest drugs to take during pregnancy.
It is important that no woman should stop taking her medication without consulting her doctor. All girls and women of childbearing age should be called in for a review with their doctor so they can discuss their treatment options and ensure that they are on the safest possible medication for them.
Any woman who is planning a baby, should be referred to her neurologist.
Letter of support for a review with your GP
Our Medical Director, Professor Ley Sander, has written the following letter to support all women in requesting a review with their doctor.
Read about the challenges other women with epilepsy face when thinking about starting a family.