Sara Pot’s day starts at 5:45 in the morning, when the working mother of four starts, preparing medications and tube feeds for her two daughters. Eleven-year-old Janneke and 14-year-old Rachel were both born with Chitayat Hall Syndrome – a diagnosis shared with only two other families in the world. This syndrome means they require round-the-clock care, as well as suffering severe joint stiffness, developmental delays, dysmorphic features and growth hormone deficiencies.
Before the pandemic, the Pot family would usually make three or four trips each month to their local hospital in Hamilton for care — a routine that often took an entire day.
“Some of the appointments could have easily been virtual. It’s a lot of work to bring two young girls in their wheelchairs to the hospital, only to be looked at for maybe three minutes and then turn around and go home.”
The trips were especially stressful for Rachel, who’d become emotionally distraught at the thought of another hospital visit.
It was while coordinating appointments for Rachel’s pain management in March 2020, when, her care team at McMaster Children’s Hospital first suggested going virtual. The pandemic had just begun, and although her daughters’ had never accessed virtual care before, Pot was immediately on board.
The McMaster team set up a test run of the video conferencing technology, walked Pot through the process, and they were set. “At times, it was almost more intimate than being in person,” she explains. “The doctors weren’t distracted by anything else.”
Pot says she also needed to develop the same focus, as a participant.
“It was really important that I take notes and clarify or repeat the advice they gave me. I only had a limited time for this virtual call -- I had to be in the moment,” she says.”
Virtual care went from something the Pots’ had never done before to something they were doing all the time. It saves the family time and energy by eliminating entire days of exhausting travel. Virtual care allows the girls to go to school after their appointments and carry on with their regular days. It offers both girls the peace of mind of being able to stay in their own beds – their safe space- while their mother communicates with doctors. Pot is eager to share how virtual care has had a positive impact on her daughters’ care because, “I saw so many benefits from [virtual care] and yet was puzzled in my role as a support parent that families were nervous about it… I want to share our positive experience so that others won’t feel so intimidated and would see some benefits to it.”