I feared losing my baby: Regina's journey through epileptic pregnancy

Motherhood comes with its fair share of challenges, but 27-year-old Regina David felt she had received more than her share when she could not hold or bathe her baby because of the frequent jerks and convulsions caused by epilepsy.

“When she was two months old, I dropped her because of the jerks. I was so confused and shocked that I ended up having a convulsion myself,” she recalls.

That incident made Regina extra cautious. She only breastfed and held her baby while seated. “I feel like I did not raise my child during the first three months. There was always someone there taking care of the baby. Because I needed close monitoring, I was escorted to the clinics.”

The first few months were overwhelming for Regina until she sought therapy.

“I felt like I was losing my mind. I wasn’t sleeping well, the baby had colic, and there were the jerks.”

When Regina got pregnant in 2024, she knew it would not be a typical pregnancy. She experienced convulsions at least once a month, and each time she rushed to the hospital to check whether the baby was okay. “I feared I might lose the baby.”

Before giving birth, she was advised to consider a Caesarean Section. “I was prepared in case there were complications that required a C-section, but I am happy it was a normal delivery.”

Regina’s epilepsy journey began when she was 13 years old. “I was lighting the jiko one evening when I convulsed. People around me thought I had simply fainted. At first, I was never taken to the hospital because nobody thought it could be epilepsy.”

The seizures continued, and she remembers that after some episodes, she would feel as though she were in a trance and speak incoherently. She dropped out of school before anyone knew what was causing her condition. She was taken to different places for prayers, as many believed it was the work of evil spirits.

She was later taken to the hospital, where she was diagnosed with epilepsy.

The first medication did not work, forcing her to seek treatment elsewhere.

School was not easy for Regina. She once stayed at home for a month after falling and rupturing her nose, an incident that further fuelled stigma around her condition. “In high school, there were so many triggers: cold mornings, studying too much, and not getting enough sleep. I thank God I finished school and later went to college to study automotive engineering.”

Speaking about her dating life, Regina says she is always honest from the beginning. “I always tell people that I have epilepsy and that I am on medication. Some say they cannot handle that, while others say they can until they witness a seizure.”

However, that does not bring her down. “If they feel it’s too hard, that’s okay. Take it or leave it.”

Her message to people living with epilepsy is simple: “Love yourself. Never, ever look down on yourself.”

Epilepsy is a chronic neurological condition in which a person experiences recurrent seizures caused by sudden, excessive electrical activity in the brain.

Edward Chengo, an epilepsy expert, says there are different types of epilepsy, making it easier for doctors to determine the most appropriate treatment.

“Every type of epilepsy has a different outcome. There is a type where, after medication, a person gets better and may no longer need treatment. There is also a type where a person will need medication for life,” says Chengo.

To determine the type of epilepsy, doctors conduct a test known as an electroencephalogram (EEG).

An EEG helps doctors determine whether the brain is producing unusual electrical activity that could cause seizures.

Normally, brain cells send electrical signals in an organised and controlled manner. In epilepsy, groups of brain cells can suddenly “misfire” all at once, creating abnormal electrical patterns.

An EEG can detect these unusual patterns, even if the person is not experiencing a seizure at the time of the test.

When it comes to expectant mothers, Chengo says that many women with epilepsy can carry a pregnancy to full term without complications. “However, hormonal changes can trigger seizures in some mothers. This is more common in cases where the seizures are not well controlled.”

Chengo says one of the biggest barriers to epilepsy diagnosis is the belief that the condition is caused by witchcraft, leading some people to seek alternative interventions. Delayed treatment of conditions such as cerebral malaria can also contribute to complications.

Dr Evelyne Muthoka, an Obstetrician and Gynaecologist at MP Shah Hospital in Nairobi, says epilepsy is one of the most common neurological disorders encountered during pregnancy, although it affects less than one per cent of pregnant women. She emphasises the importance of preconception care. “For a woman who already has a diagnosis of epilepsy, it is very important for her to start the journey before she becomes pregnant,” says Dr Muthoka.

She adds that it is always best to assess the safety of any medication before conception. “Most of the drugs prescribed nowadays are safe during pregnancy. However, some medications used in the past have been associated with significant birth defects.”

Dr Muthoka says that if a woman discovers she is pregnant before receiving preconception care, she should not stop taking her medication. “If she stops taking her medication, seizures may return and put both mother and baby at risk.”

The first 10 weeks of pregnancy are particularly sensitive for foetal development, and some women may not even know they are pregnant during this period.

She advises women to visit their obstetrician and gynaecologist, who can review their medication and, in collaboration with a neurologist, determine whether it is safe to continue or whether a controlled switch is necessary. “The first step in preconception care is to control the seizures, ensure that the medication is effective, and confirm that it is the safest option available.”

Every time a mother experiences recurrent seizures, oxygen supply to her organs is reduced, which can also affect the developing baby.

Dr Muthoka emphasises that epilepsy alone is not an indication for a Caesarean section. “A woman with epilepsy can have a vaginal delivery if there are no other obstetric concerns.”

During labour, healthcare providers advocate for effective pain management.

Professor Moses Obimbo, a scientist and researcher, says hormonal changes during pregnancy need to be carefully managed to reduce the risk of seizures.

“Especially the rise in progesterone levels, which can increase the likelihood of seizures during pregnancy,” he said.

He adds that medication should be reviewed and optimised as soon as a woman discovers she is pregnant.

“When these patients experience seizures, they are exposed to another risk, falls, which can result in what we call placental abruption. If they fall on their abdomen, the placenta can separate from the uterus.”

To women living with epilepsy who may be worried about conceiving and carrying a pregnancy to term, Professor Obimbo offers reassurance. “We have experts who are trained to manage high-risk pregnancies. Women should not be afraid that pregnancy will automatically expose them to greater risks.”

Neurologist Dr Simon Kariuki, a scientist at Kenya Medical Research Institute (KEMRI), says women with epilepsy can become pregnant and go on to deliver healthy babies, provided they seek medical advice from the outset.

He notes that several physiological changes occur during pregnancy, including an increase in blood volume, which can rise by as much as 20 per cent.

“Medication choice is also critical. Some drugs, such as sodium valproate, are not recommended during pregnancy because they increase the risk of birth defects, including neural tube defects. Safer alternatives, such as levetiracetam and lamotrigine, may be considered. Folic acid supplementation is essential because it helps reduce the risk of birth defects.”

Dr Kariuki adds that regular antenatal care and monitoring are necessary for both mother and baby.

Women should record any seizures or changes in symptoms, as this information helps doctors adjust treatment. Planning medication changes before conception also reduces risks.

With proper medical support, monitoring and family involvement, women with epilepsy can safely manage pregnancy and improve outcomes for both themselves and their babies.

Fredrik Beuchi, an epilepsy advocate, says support groups are available for both caregivers and people living with epilepsy.

“Since epilepsy is a chronic condition, counselling is extremely important because it can be overwhelming for both the caregiver and the person living with epilepsy.”