This is a freelance narrative by Helen Cooper.
In May, 2005, my beautiful son Jamie, was born. We had waited a long time to have him, some six years after our first child, Maddie, was born. My first pregnancy had been marked by many health issues, including gestational diabetes and high blood pressure. Maddie was preterm, and when she was born, we weren’t able to take her home. Her low birth weight meant she had to be hospitalized for 20 days and we struggled to get her weight up; sometimes it seemed like she would lose the battle but finally, she gained the weight the doctors deemed sufficient and we were able to take her home. My pregnancy with Jamie was all the contrary; he made it full term and was born naturally. As the months passed, I used to count my blessings for our son, who never had weight problems or feeding issues.
I was completely unprepared for what happened one day when, at six months, Jamie was playing at his baby gym while I worked on my computer. Suddenly, his left arm and leg began jerking; as a former nurse, I recognized that he was having a seizure. He continued to seize for around 15 minutes, by which time I had called his pediatrician, who told me to bring him in to hospital immediately. The hospital performed what seemed like countless tests on him, and said that there was nothing wrong; he would probably never seize again, they said.
Something inside told me that what had happened was not a one-off event. I was right. Three weeks later, he had another seizure, this time accompanied by a fever. His contractions were very violent and he lost consciousness. This type of seizure, I learned, is known as a ‘generalized tonic-clonic’ (or grand mal) seizure. We rushed him to ER, and we were told he had epilepsy. He was given a medication which unfortunately did not stop the seizures… these episodes continued to disrupt his peace, often when least expected, becoming stronger and stronger each time, it seemed. The stress caused to our family was immense; the doctors were not as informative as we needed them to be, and the medication clearly ineffective. Maddie, my eldest daughter, would crouch beneath a table every time Jamie seized, unable to deal with the heavy emotional toll. She began to distance herself from the little brother she used to love bathing and dressing, not the least because he occupied almost 100 per cent of my attention, as I fought to discover the exact nature of the illness that plagued him.
After seeing many different doctors to no avail, I came across Jamie’s current doctor through another mom at school. Jamie was two years old at the time. The doctor said he had Dravet Syndrome, a type of epilepsy classified as ‘rare and catastrophic’ which begins in infancy and has associated conditions, including behavioral and developmental delays, chronic infections, sleeping difficulties and growth and nutrition issues. We learned that Jamie would never outgrow this disease and that he would always need someone caring for and supporting him. My husband and I decided that I would be his primary caregiver. Although I had planned on returning to nursing when Jamie turned three, I realized that plan would not be possible. Knowing that Jamie’s issue was severe and that the seizures would continue also led us to seek psychological support, to help us ascertain how we could work together to ensure that Maddie overcame her fear, and to ensure we learned how to make her feel that her happiness and wellbeing mattered just as much as Jamie’s.
Today, Jamie continues to struggle with his development goals. His doctor has helped us greatly and now, Jamie has seizures around twice a month only, and they do not last as long as they used to. We have found great support from Sushi, our seizure alert dog, who has been trained to bark loudly to alert us whenever Jamie is seizing. Sushi has been a great source of unconditional love and support for Jamie and indeed, she did a great deal to mend the broken bond between Jamie and Maddie, who, today, are closer than they were when Jamie was born. We are still waiting for a cure, and I don’t think we will ever stop hoping we find one. Until then, we will continue to face Jamie’s epilepsy as just another challenge that will help us grow stronger and more united as a family.