What a wonderful question. Thank you.
Lyrica was born with a congenital heart defect. We did know this prenatally, so we were prepared. We live in Peterborough, so my husband and I moved to Toronto to prepare for her birth.
As I said, she had rock star hair at birth. It was an inch and a half long. It was brown and it stuck up everywhere. The nurses at SickKids continued to smooth it down. We always spiked it up. She was big. She was eight pounds, which was a massive baby for being in the cardiac care unit. There wasn't a single medical professional who didn't come in there and say, “Wow, what a big baby.” I just joked with them at the time: “You told me bigger was better, so here we go.”
We knew she would require immediate heart surgery. Her surgery went well, and she came back. We were home within a month from open-heart surgery. She grew. She thrived. She learned to laugh. She smiled. She interacted with her sister. My daughter loved her baby sister.
She did get to meet some of our family members, even with COVID. We were very careful about who she got to see and when, because of everything going on. She was severely immunocompromised.
She learned to laugh the day we went in for a checkup that had us being admitted entirely unexpectedly. It was the first time I had gone to Toronto without an overnight bag, and we were again unexpectedly at SickKids. She had another heart surgery within a week. Recovery was a little longer this time. It took a little longer to get home, but again, we were home, with the idea that she should be good for quite a while.
She didn't have a terminal diagnosis. She had a very good prognosis. She had a 90% chance at a good life, which, in my mind, isn't a 90% chance at living; it's living a good life.
She developed a complication with arrhythmia. We think that is ultimately what caused her to die unexpectedly. It was a traumatic night, with ambulances and the ER, very much like what you would see in a TV show. My husband works for Ornge air ambulance, the airlifting place in Ontario—I don't think either of you are from Ontario—which is why he took longer to return to work. We had them on standby to try to get to SickKids on time. Peterborough has a wonderful hospital, but they're not a pediatric centre.
Her life was happy. The time she was home was happy. She spent time with her family. We went swimming. We did the things you do with your three-month-old, your four-month-old. It was lovely to have her. My daughter still talks about her daily. I do have a new young son. He's two and a half now, so we are trying to teach him about his older sister.