Since our daughter was little, we’ve worked with cardiologists, neurologists, therapists, orthotists, geneticists, pharmacists, speech pathologists—so many “ists.”. There was a time when I followed a specialist’s advice without question. They were the professional—the expert. Who was I to question them?
That was then. Now I question everything. I research every word. I seek second and third opinions. I don’t care about the glares. I don’t care if I’m disliked. I do care about my children. They are my priority.
Last week my husband took the kids to his parent’s while I hosted a party at our house. At 11:30 p.m. he phoned to say an ambulance was coming to take Avery to the hospital. She was having a seizure that wouldn’t stop.
I met them in the ER. The seizure eventually stopped on its own, without medication this time. They eventually sent us home and told us to follow up with our neurologist. The following afternoon, I put Avery down for her nap. Thanks to our generous family, we now had a video surveillance camera in her room. I could see her lying in her crib on her side, staring, not blinking. I ran to her room as her eyes began repeatedly flicking from the centre, to the right.
It was happening again. Another Convulsive Status Epileticus Seizure.
I checked the clock and started timing. I screamed for my husband who was working in the yard. At the five minute mark, I phoned 911. She was still seizing and she vomited. She began to choke. I reached in and pulled out a long strand of spinach, brought up from her lunch and now caught in her throat.
Despite removing the food, she was turning blue. She had stopped breathing when the paramedics finally arrived. She was still seizing when we got to the hospital. Seizures generally last a few minutes. This one lasted well over 30 minutes and required multiple doses of medication to make it stop.
This was the first seizure my husband and I had seen from start to finish and it was the worst thing I’ve ever seen in my life.
We were told the pediatrician on-call was on his way. We waited nearly five hours before he came to see us. I was livid. Not only because we had to wait so long, but because this was the infamous doctor I had taken Avery to see. Years ago, I went to him to address milestones not being met and to find out why it was such a struggle to feed her. She was losing weight and we were justifiably concerned.
I needed his help but he made me feel like I was a hysterical mother making something out of nothing.
He walked over to our daughter who looked so tiny, lying on a gurney in the hallway of the ER and said, “Hi folks. How are you?”
“Uh, not good,” I told him.
“Of course,” he said. “This is Avery? How’s he doing?”
“SHE is not well.” we told him. “Actually, you’ve seen her before. Several times.”
“Oh really?” he remarked, casually flipping through his notes.
“Yes, REALLY!! (This outburst got his attention). Do you know what you told me when you saw her? YOU TOLD ME TO RELAX. You said Avery would be fine. You said she would eventually eat, but I needed to try harder.”
I reminded him that when we came to him for help, he dismissed us. He made me feel ridiculous. He told me I needed to relax, but to also do more?
I told him that I didn’t take his advice and instead found help elsewhere. And our concerns, the ones he belittled, were validated.
Firmly, though I was shaking and close to tears, I told him that we would not be staying at this hospital. We were going to be transferred to the university hospital to be seen at the Seizure Disorders Clinic.
He didn’t say anything. He just nodded and left.
A few minutes later he returned and said an ambulance would be there to transport us to McMaster Hospital within the hour.
Then he totally caught me off guard by thanking me.
“I respect you for having the guts to tell me I made a mistake”He said. “I needed to hear that. Thank you.”
A weight lifted—I felt relieved that Avery was on her way to a place where she would be looked after and we would hopefully get some answers and guidance. I also felt relieved to shed the heavy burden of resentment I’d been carrying.
I’m not the most assertive person. I will do anything to avoid confrontation, but when it comes to advocating for my children, all bets are off.
In this doctor’s defence (this is what we do once we’ve made peace—we put ourselves in their shoes) I don’t blame him for missing this diagnosis. Nobody could’ve guessed it. Avery’s disorder is one-of-a-kind rare. Her symptoms mirrored so many things. To him, she was a normal baby, maybe smaller than normal, but healthy enough.
After years of dealing with hovering, hypochondriac parents who diagnosed their kids with scary ailments via Dr. Google, I can imagine he was skeptical when presented with a seemingly typical baby in the arms of a nervous mother.
That said, doctors must always listen and give their patients the benefit of the doubt. Parents know their kids best. And doctors can’t always, statistically be right.