‘Fear of epileptic seizures didn’t stop me having children’

When Debbie McCrudden was diagnosed with epilepsy in 2014 she was asked if she was planning on having children soon.

She knew it was what she wanted to do with her life but the diagnosis made her “fear the unknown”.

“I was afraid to leave the house,” she told BBC News NI. “I was afraid to do anything on my own.”

Epilepsy is a common condition that affects the brain. About 22,000 people in Northern Ireland have it and most can have normal lives if their seizures are well controlled.

Seizures can affect people in different ways but can include uncontrollable jerking and shaking, losing awareness or collapsing.

Anti-epileptic drugs (AEDs) can be very effective in stopping or reducing the frequency of seizures, but some AEDs can harm an unborn baby.

When Debbie wanted to start trying for a baby, she was worried about how to navigate pregnancy as her seizures were not under control.

The now 38-year-old, from Lisburn, said she was reassured that having seizures while pregnant was not “the end of the world”.

“To be told that there were many different teams that look after women who are pregnant with epilepsy, that it can be done, was what I needed to hear,” she said.

When she became pregnant with her eldest child Conall, now six, Debbie’s seizures decreased, but her biggest fear was still falling and hurting her baby.

“I was never really worried about the seizure itself, it was more the falls. I was really afraid of being anywhere near stairs,” she said.

As pain, tiredness and stress are triggers, she planned for an early epidural to block pain during the birth.

The birth was traumatic and Debbie was having absent seizures – where you lose awareness of your surroundings for a short time.

Soon after having Conall, Debbie’s seizures returned.

She was very anxious when she took Conall home and was too afraid to be on her own.

“Being in that vulnerable position again with a new baby, it was very scary,” she said.

She said she would not have been able to cope without the support of her mother and husband.

The medication Debbie was on was not really helping her and the next step was to try different drugs, which posed a higher risk to any future pregnancy.

She said she had to make a decision quickly on whether or not to add to her family.

Two years after Conall, Debbie had her second child Lilly.

She said this pregnancy was “really awful” as her seizures increased.

At one point she was in a sling because she injured her shoulder having a seizure.

“It was very difficult to do anything when your right arm is out of commission, especially with a small baby, and being pregnant as well,” she said.

Again, Debbie’s mum came “to the rescue” after she had Lilly.

“She would look after me all day and my husband would then take over, almost like in shift patterns,” she said.

“But they were helping me be the best mum I could be so that I could look after the kids.”

About 10 weeks after Debbie had Lilly, her consultant changed her medication which worked better for her.

Gradually she was able to be alone with her kids.

Now her epilepsy is under control, and she is not having any seizures.

But she is mindful that that could change in future.

“I didn’t have epilepsy one day and the next day I did,” she said.

“I’m always going to have that fear, always going to have that anxiety in the back of my head.

“Every decision in my life I think what’s the risks, which is exhausting,” she said.

“Things like, if I’m making the dinner and you’re like, who’s in the house, are you going to face plant into the cooker? Am I going to accidentally cut my arm if I have a seizure?”

Debbie has spoken “very informally” to her children about epilepsy.

“They know exactly what to do and it’s great having them be so savvy about it,” she said.

Debbie said while having kids was “a terrifying time” for her, it was the right decision.

“I’m glad I didn’t let the fear stop me doing what I wanted, because the fear has stopped me making other decisions, and has made me not do other things,” she said.

“I didn’t want this taken away from me as well.”