Good morning, and thank you for giving us this opportunity to be a voice both for my Grace and for Jessica's Vincent, and for other bereaved parents as well.
While my story is extremely long and complicated, I will stick to the parts that apply here.
My daughter, Grace Neala Tamsin, was born back in 2013. She was an unexpected, late-in-life surprise, and originally she was a twin. We found out early that the twin probably had a fatal genetic disorder, and if the baby did make it to birth would probably only live for a few hours. We were given no further information than that and sent on our way. Then, at 17 weeks, I contracted a food-borne illness called listeria, pretty much the worst infection you can get when pregnant. Few babies survive it.
When I called my rural maternity ward, their suggestion was to take a warm bath, since we hadn't reached the 20-week viable stage, saying I would just sit in emergency for hours since I wouldn't be a priority.
Our women's and children's hospital in Halifax, the IWK, did admit me immediately, found out the compromised twin had died, and when my water broke two days later, they said I would basically be in hospital on IV antibiotics until the surviving baby was born. Keep in mind I was only 17 weeks pregnant at this point. Nine weeks later, Grace was born in distress at 26 weeks. She had a long haul at the IWK before being released at seven and a half months old. I lived in the hospital with her the entire time.
Fast-forward three years, and Grace is a happy, healthy, normal child with only a bowel issue as a remnant from her NICU days. Even that had been downgraded in early December to minor follow-up. Then, on December 28, we took Grace into emergency with what everyone thought was just another minor bacterial infection to her bowel. Eighteen hours later, she died. Invisible scar tissue that couldn't be seen on any imaging equipment, the unexpected result of an operation at six weeks old, strangled her bowel and caused her death.
Due to the many demands early on with Grace, I stayed home with her. I had only just returned to a temporary job in the summer of 2016, which ended that same December. With Grace's death, I didn't think about EI right away, and when I did finally apply, I barely qualified because of the hour requirements. They asked me why I had taken so long to apply. I told the girl on the other end of the line that my three-year-old daughter had died. She had no idea what to say. I felt I had to apologize to her for making her cry.
She had to pass me to a manager to sort out my application, so I had to explain again what had happened. It was suggested I could apply for sick EI as well if I were to submit a doctor's note, so I went to my doctor who wrote a “bereavement of daughter” note.
Weeks later I got a letter in the mail saying my claim was rejected, with no reason given. I called the same EI manager back. I was told bereavement was not an acceptable excuse for sick leave. I asked what would be acceptable. They weren't able to come right out and say it directly, but when I asked about stress, they implied that might work.
So, I had to go back to my doctor and explain to him that the first note was denied. He wrote another note using stress as the reason. Stress is an acceptable excuse; death of a child is not.
We also received unnoticed automatic deposits of the child tax credit, months' worth of deposits, even though Grace's health card was cancelled, her social insurance number was cancelled, and a death certificate was issued.
Mention has been made by previous witnesses of family and friends stepping in to tend to things—making sure bills are paid, groceries bought, all the little things that need tending to. Those are the things I usually thought about for others, so we just didn't notice until months later when I did, and it all, obviously, had to be returned. When I asked the CRA lady why payments wouldn't just automatically stop in those situations, her response was that because of security, one department couldn't inform another department even when dealing with death.
Through all of this, my husband Neil has continued to work. Some days he copes; some days he doesn't. Luckily he has a very understanding boss, but we weren't in a financial position for him to take any real amount of time off to grieve. Neil has, unfortunately, had a much more difficult journey. Over a year and a half later, almost two years now, there are still many days he can't face the world. Would he be in a better place now if we had had the opportunity to allow him the time he needed not to worry about bills piling up and obligations that needed to be met? I think it certainly would have helped him.
I will turn over our remaining time to Jessica Weatherbee.