Amanda and Nickolas’ Surgery – SBCAN

Amanda and Nickolas' Surgery Story

Nickolas as a baby in an incubator.

I found out that my son had spina bifida in July 2009. I was 22 weeks pregnant and sitting in a room alone and was being given all of these choices about what to do with our lives. I had a 15 month old daughter at home, and was so worried about how her life was would be impacted. I was worried about what his life would be like, and I just wanted to know what spina bifida looked like.

We continued with the pregnancy, and over the coming months I found a lot of support online. We could see what childhood and adulthood looks like, and have some knowledge about our future. At the time fetal surgery was not an option for us, while this was disappointing and frustrating, we knew that fetal surgery is not a cure, and he would have to wait to be born before having surgery.

We talked with doctors at Sick Kids and Holland Bloorview, and had regular appointments and ultrasounds at Mt Sinai every couple of weeks, and I also continued to see my own obstetrician. Nickolas was born right on time by cesarean section. I was able to see him and hold him after he was born and before he went across the street to Sick Kids Hospital. He had his first surgery at 24 hours old, and stayed at Sick Kids for 2 weeks on 5C. He had a shunt placed at 3 weeks old.

NickolasĀ is now 9 years old, and in grade 5. He plays adaptive sports and goes to Cubs, he swims and plays with his friends at recess. He is a huge wrestling fan. He and his sister love each other very much, and has the greatest laugh. He walks with crutches and braces, and uses a wheel- chair to be independent and get to where he wants to go.

Nickolas riding his bike.