Patient & Family Centered Care – Healthcare Social Media consultant, speaker, author
In 1990 when our daughter, Brenna was nine months old, I looked at her and just “felt” that something was not right. I had an intense fear that she was never going to walk. When she did walk at thirteen months I was told by people that my fears were unfounded and that I had worried over nothing. A few months later when she started having seizures the doctor told me not to be concerned. “She’ll grow out of the epilepsy, most kids do. You are worrying too much. You’re an over anxious mother”. Two years later and numerous hospital stays from 10 to 237 days, we found out that genetic testing revealed that our darling had a progressive life threatening illness called neuronal ceroid lipofuscinosis aka Batten Disease.
For the next four years, our lives revolved around Brenna’s 24-hour schedule, which included medications, liquid tube feeding every four hours and caring for all of her bodily functions. During this time, I gave birth to our younger daughter and after genetic testing, we were told that it was likely she had another rare disease. That was until the phone call came to announce that it was just an error on the slide and that she was perfectly fine. Our experiences with health care and patient & family centered care ranged from the very worst such as finding out Brenna’s diagnosis in the parking lot to the very best when the funeral home was able grant several of our requests that had never been tried before.
I found meaning in volunteering my time to help other families while Brenna was alive by serving in an informal advocacy role at Canuck Place, and in becoming a parent advisor for a number of community groups and several research projects. After Brenna died, I served on the Board of Directors for Canuck Place, started speaking on their behalf, and often presented to support groups about my own experiences with a view to helping parents of children with disabilities and complex needs gather and find resources. All through this time, I worked as a wedding and event planner. One day, a young bride was crying because her napkins did not match the exact shade of her invitation. Despite the fact that I explained it was unlikely the two would ever be in the same room together and that people really would not notice the colour difference she could not be consoled. It was an “ah ha” moment for me and I knew I had to do something that would blend my business skills with my life experience. Shortly thereafter, in 2005, the Family Liaison role came up at BC Children’s Hospital and I have been there ever since.
I count myself as one of the few people who is blessed to be able to go to work and do something that they truly love. When Brenna was so little and I had that intuitive feeling that something was wrong, I was discounted as being an over-anxious mom–my voice was quieted and silenced. Now every day when I work at the hospital, set up a family advisory committee, or when I speak to health care organizations about patient & family centered care issues, it gives me a great sense of satisfaction knowing that I am helping parents struggling through the daunting world of healthcare to find their voice.
Be sure to check my website and blogs which speak to other facets of my life: