“My head is swimming” has come to mean something very different than the classic saying people usually associate with it. Hydrocephalus (water and cerebral fluid build up in the brain) is an un-discussed illness. According to the Hydrocephalus Association, as many as one to two of every 1,000 babies are born with hydrocephalus, making it as common as Down’s syndrome. Hydrocephalus doesn’t just affect babies it affects people in all stages of life from infants to seniors.
“Two little princesses, what more could we want,”
Marc and Karen Garson were so excited when they found out they were having twins. “Two little princesses, what more could we want,” says Karen. What the new parents were not anticipating was for them to come into this world so early. “Eight-and-a-half weeks early, weighing no more than a pool ball. OK, maybe a bit more, but they were that small,” says Marc. At two pounds four ounces each, Erin and Sara came into this world.
Sara, Erin’s sister, Is a huge support to her sister. From cheering her on at her games or staying in the hospital with her through her surgeries. “Growing up with a twin is like always having a built-in best friend.You also have someone there for you, and you never feel like you’re alone” says Erin. Erin is very proud of her sister and all that she is accomplishing alongside her. “At the end of the day, you know you always have someone to talk to and relate to,” says Erin.
“I spent many months in the hospital, and doctors really didn’t know what was wrong”
Grade 2 was the first time hydrocephalus really took a hold on Erin’s life. That year she went through two separate shunt revisions, which weren’t easy and caused her to spend weeks in the hospital. Fortunately, after those revisions, Erin was lucky to go many years without needing any form of intervention. In Erin’s final years of high school, things got really rough. “I spent many months in the hospital, and doctors really didn’t know what was wrong. I had to have two shunt revisions in the span of a year, and many hospital admissions after that due to complications,” says Erin.
Going through tough times has never been a deterrent for Erin. She stays active and competitive by playing sports. “I play hockey as my main sport. I absolutely love being on the ice. I am a fairly competitive person, and also played soccer growing up.” Erin has won awards for her efforts playing hockey on her local team the London Devilettes.
“I absolutely love being on the ice. I am a fairly competitive person, and also played soccer growing up.”
London, Ontario’s pediatric center doesn’t have the proper equipment to care for Erin’s hydrocephalus especially in emergency circumstances. Erin makes a trip of just over 195 kilometers to go to the Sick Kids Hospital in Toronto where her neurosurgeon is as well as his team. This incredible team has been working with Erin since she was little. “I am so thankful for all of the Sick Kids staff and my neurosurgeon, as they gave me the absolute best care during these tough times. I had a very positive experience with Sick Kids. It is one of the top hospitals in the world, and I received nothing but the best care.”
Obviously, the hospital isn’t a place where people want to be, but the staff makes it as comfortable as possible. There is a lounge called Marnie’s Lounge, where patients and family can hang out with other patients and visitors. Erin loved this lounge because it allowed her to take her mind off treatment and was a positive space to enjoy time with family and friends.
At Sick Kids Hospital they have a team of Child Life specialists who interact with the patients as mentors to help them through their visits. Their main goal is to distract you with fun games and activities during tough procedures, such as getting an IV or blood test. “I had a great fear of needles, and I feel like now, thanks to Child Life, my fear has been greatly reduced.”
Erin is currently studying at the University of Western Ontario pursuing a degree in Family Studies and Psychology. She plans on doing her masters in counseling or therapy and working with children in the hospital. “I really want to use my experiences and help others in their time of need.” Erin hopes one day to give back to her experiences at Sick Kids by becoming a Child Life specialist once she finishes school.
“Sometimes it’s tough having an illness because you feel different or left out, but I’ve learned to accept my illness and embrace what it has taught me.”
“Now, I can say I have gone three years without a revision and I’m doing quite well. Sometimes it’s tough having an illness because you feel different or left out, but I’ve learned to accept my illness and embrace what it has taught me. I am a stronger and tougher person because of it, and because of experiences in the hospital, I am able to help others going through similar situations”
Erin is continually exceeding expectations from her doctors and from her peers. She is successful in school and has dreams of traveling the world. “Being hospitalized was tough, but Sick Kids was the best hospital I could’ve asked for, and I am who I am today because of them.”