Living with Epilepsy: A Mother’s Journey to Parenthood

When Debbie McCrudden received an epilepsy diagnosis in 2014, she was asked about her intentions regarding having children in the near future. While she recognized that starting a family was a life aspiration, the diagnosis caused her to “fear the unknown.” She conveyed to BBC News NI, “I was afraid to leave the house,” adding, “I was afraid to do anything on my own.” Epilepsy is a prevalent neurological condition impacting the brain. Approximately 22,000 individuals in Northern Ireland live with epilepsy, and the majority are able to lead typical lives when their seizures are effectively managed. Seizures manifest differently among individuals, potentially involving involuntary jerking and shaking, temporary loss of awareness, or collapse. Anti-epileptic drugs (AEDs) are often highly effective in preventing or decreasing the occurrence of seizures; however, certain AEDs carry a risk of harming an unborn baby. When Debbie decided to begin trying to conceive, she experienced apprehension regarding managing a pregnancy, given that her seizures were not yet controlled. The Lisburn resident, now 38, stated she found comfort in learning that experiencing seizures during pregnancy was not “the end of the world.” She remarked, “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.” Upon becoming pregnant with her first child, Conall, who is now six, Debbie observed a reduction in her seizures. Nevertheless, her primary concern remained the risk of falling and potentially injuring her baby. She explained, “I was never really worried about the seizure itself, it was more the falls. I was really afraid of being anywhere near stairs.” Recognizing pain, tiredness, and stress as triggers, she arranged for an early epidural to manage pain during labor. The delivery proved to be traumatic, with Debbie experiencing absent seizures, a condition characterized by a brief loss of awareness of one’s environment. Shortly after Conall’s birth, Debbie’s seizures recurred. Debbie felt significant anxiety upon bringing Conall home and was hesitant to be left alone. She commented, “Being in that vulnerable position again with a new baby, it was very scary.” She credited her ability to manage the situation to the indispensable support provided by her mother and husband. The medication Debbie was currently taking proved ineffective, necessitating a change to alternative drugs that carried an increased risk for any subsequent pregnancies. She indicated that she needed to make a prompt decision regarding expanding her family. Two years following Conall’s birth, Debbie welcomed her second child, Lilly. She described this pregnancy as “really awful” due to an escalation in her seizures. On one occasion, she had to use a sling after sustaining a shoulder injury during a seizure. She stated, “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.” Once more, Debbie’s mother arrived “to the rescue” following Lilly’s birth. She explained, “She would look after me all day and my husband would then take over, almost like in shift patterns.” She added, “But they were helping me be the best mum I could be so that I could look after the kids.” Approximately 10 weeks after Lilly’s arrival, Debbie’s consultant adjusted her medication, leading to improved effectiveness. Over time, she progressively regained the ability to be alone with her children. Currently, her epilepsy is managed, and she experiences no seizures. However, she remains aware that this situation could evolve. She stated, “I didn’t have epilepsy one day and the next day I did.” She further commented, “I’m always going to have that fear, always going to have that anxiety in the back of my head.” She expressed, “Every decision in my life I think what’s the risks, which is exhausting.” She elaborated with examples: “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 discussed epilepsy with her children “very informally.” She noted, “They know exactly what to do and it’s great having them be so savvy about it.” Debbie reflected that while having children represented “a terrifying time” for her, it ultimately proved to be the correct choice. She stated, “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 concluded, “I didn’t want this taken away from me as well.”