Janet and Gordon Baker – Sharing Fond Memories of the Early Years of Hydrocephalus Canada and Their Beloved Son  ​

by Mary Dufton

Believe it or not, Hydrocephalus Canada is turning 50 this year!  Throughout 2023 we will feature stories of our many founders who remember the former Spina Bifida and Hydrocephalus Association of Ontario. They will share their memories of how the organization started and why they continue to support it today. They will also tell us why they became involved; their impressions on how it has evolved and share its many important accomplishments.  Finally, our founders will offer helpful advice for families and individuals affected by spina bifida and or hydrocephalus.

Our first story focusses on Janet and Gordon Baker and their son, Gary who was born with spina bifida, hydrocephalus and the Arnold-Chiari malformation. 

Gary was born on March 19, 1966, with spina bifida and hydrocephalus.  He spent about two months at the Hospital for Sick Children (Sick Kids) before he could join his older brother and sister (aged three and five) and his parents at home.  

When Gary was released from Sick Kids hospital on May 24^th, 1966, neither Janet nor Gordon had much knowledge of spina bifida or hydrocephalus. Navigating Gary’s complex needs and their hopes for the future was a steep learning curve for everyone.

About five years later, Janet and Gordon attended a small gathering led by another parent, Mike Bailey, a meeting that led to the formation of SBHAO, now Hydrocephalus Canada. The main goals of the organization were: To establish connections through a supportive community of families dealing with the challenges of spina bifida and/or hydrocephalus; to provide resources on up-to-date information on the conditions; to provide opportunities to unite for recreation and sharing; to establish ongoing connections and facilitate communication with the medical profession and to include adults with spina bifida and/or hydrocephalus in the conversation. 

In Janet’s words:

“The connections and friendships made through our involvement with SBHAO will always remain in memory as a special time in our journey – an exceptional community of people brought together, working together, supporting each other and making a difference. Of necessity, as Gary moved through the educational system, and on to a sheltered workshop setting, our priorities shifted to working more closely with Community Living Mississauga and the Peel Board of Education. But our memories of that precious time, the early days of SBHAO continue to warm our hearts.”

“Some of my fondest memories of being part of the SBHAO/HC Community revolve around the picnics, the coming together of families with their kids, being outdoors, joy in the air. And the Board meetings, working together to make things better for our kids. And then there was the famous 1979 Mississauga train derailment, when our family was given food and shelter for several days by another SBHAO family who lived outside the danger area.”

Over the years Gary had many health complications and hospitalizations. He beat the odds more than once—his family came to count on it. At one point he spent a year at Sick Kids Hospital and what was then known as the Ontario Crippled Children’s Centre—a period when swallowing problems meant he needed a trach for over six months.  Another year or two later he spent another six months at the hospital, but again, he managed to pull through.  More time, so many more precious memories. Gary lived life to the fullest—so many things. He loved country music, travel, concerts, bowling, the Toronto Blue Jays. Watching Johnny Carson, watching Wheel of Fortune. Gary loved people.

In the late fall of 1994 Gary had to have a gastrostomy (an artificial opening into the stomach for nutritional support or gastric decompression). Gary had one more Christmas and his birthday with his family—until mid-April when he was showing signs of being unwell.  The family played some board games with him, before taking him to the hospital to be examined. Sadly, Gary never came home. He died on May 11, 1995, when he was 29 years old, from untreatable aspiration pneumonia.

Since Gary’s death, the Bakers have not been directly involved with Hydrocephalus Canada, but continue to support the organization. They remain very grateful for the support they have received.  

Janet believes that the organization has steadily and significantly expanded, building on the goals she remembers from the early days – an ongoing story and a huge accomplishment.

Janet offers the following advice to any family or individual impacted by spina bifida and hydrocephalus: “Through all the ups and downs, savour the good times and take the hard times one day at a time. And always remember you are not alone.  Fifty years ago, responding to a need just like yours, a small group of people came together to form a support community that became SBHAO, now Hydrocephalus Canada.”