As parents, we’re asked to make difficult decisions when it comes to our children. But I never imagined that one day, I’d make the decision to have half of my little Ainsley’s brain removed. Each step of the process that led to that decision was fraught with fear and doubt.
When Ainsley was 11 months old, pediatricians noticed she wasn’t reaching the normal stages of development for a baby. Over the course of the next few years, Ainsley saw many specialists to determine what was wrong. Finally after ruling out many options including a fatal degenerative disease, they determined that Ainsley had an unusual brain abnormality.
My daughter participated in many types of therapy to help her learn to speak and be like kids her age, walking and running. She was able to attend day care and regular school with help of an aide. She loved to be active and participated in dance, soccer and swimming with supportive understanding teachers and coaches.
But before she turned 6 what we dreaded the most happened.
She started having epileptic seizures. The first seizure happened at night, when we were putting Ainsley to bed. It lasted about 1 minute, but to me it felt like hours. I felt so powerless and scared. As time went on the seizures happened more frequently and increased in duration. When she had one that lasted more than 5 minutes we were terrified and rushed her to the Montreal Children’s Hospital by ambulance. These types of severe seizures continued and resulted in Ainsley suffering paralysis of her left side for up to an hour afterwards. The trips to the Children’s became more frequent. We were terrified. When the convulsions started, we never knew when they would end or what after-effects she’d experience. It was then that Dr. Elisabeth Simard-Tremblay began to care for our daughter and our scariest and most rewarding journey began.
The nurses and doctors at the Children’s taught us what to do when Ainsley had a seizure. We had the tools, but we also had the firm belief our daughter was suffering. For us, it was important to keep doing tests to understand the exact cause of her condition. These tests determined that our girl had been having epileptic seizures since she was a baby, but they most often happened at night, so we never realized it. The seizures had slowed her mental development.
In March, 2015, Dr. Simard-Tremblay and Dr. Jean-Pierre Farmer, the Children’s Surgeon-in-Chief, opened a door that was filled with hope. He said it was possible to cure Ainsley’s seizures, but to do so, they’d have to disconnect the half of her brain that had the abnormality.
How do you make a decision like that?
The specialists at the Children’s were wonderful in explaining the pros and cons of the procedure to help us make the best choice for our family, and most importantly for Ainsley. It was the hardest decision I’ve ever had to make. We thought about it long and hard, and decided to move forward, for her.
The day of the surgery, Ainsley was very calm and serene. She had two questions: “Will I still be myself? Will I lose my memories?” We didn’t expect questions like that from a 9-year-old child.
Luckily, the Child Life specialists were there for us. I could never thank Nathalie enough for her incredible work. She not only helped my daughter through her journey, but also helped us to understand the process. She got us through the exhausting day when Ainsley had her 15-hour surgery.
By “losing” half of her brain, Ainsley lost half of her eyesight and motor function. But the body being what it is, the remaining half of the brain is working extra hard to replace the other half. She hasn’t had a seizure since surgery and we’re constantly reducing the number of medicines she has to take.
She goes to a specialized school for children facing physical challenges, and therapy sessions are a part of her daily schedule. She has regained the ability to walk and is working on running and swimming again. Her vocabulary and speech has improved greatly and so she is better able to communicate with others. Ainsley is making great strides and we are thrilled!
I call her my “Ainsley 2.0.” All I want for her is to have the same opportunities as others to reach her full potential. Now that we’ve eliminated most of her obstacles, thanks to the Children’s support and expertise, she is free to grow in any way she chooses.
-Jocelyn, Ainsley’s mom