My father died 5 years ago in a hospital — and we’re still seeking answers

This First Person column is by Sonali Karnick, a CBC journalist in Montreal who has been searching for answers to why her father died. For more information about CBC’s First Person stories, please see the FAQ.

When the hospital called my mother and told the family to get there as soon as possible, we knew what it meant even if we didn’t want to believe it. My dad’s heart had stopped. It was a likely outcome — he had been in intensive care and in the neurology ward for about seven weeks — but his death was still a devastating blow. 

My mother, my sister and I stood in the hallway outside of his room after saying our final goodbyes. As we stood in that hospital hallway, wiping away tears, my dad’s neurologist urged us to request an autopsy. 

My dad was diabetic and had essential tremors, but that didn’t explain why he suddenly went into a coma or why his heart stopped. 

I knew the autopsy wouldn’t bring back my dad, but I thought knowing what happened might help my family make some sense of his last few weeks alive and give us more closure.

When the paperwork for the autopsy came back, it said “inconclusif” in French. There was a note in the brief report that said a sample of his brain tissue was sent to a neuropathologist at another hospital for consultation.

After that autopsy report, we had no further communication with anyone from any hospital regarding the results of the consultation mentioned. We didn’t even know if it had been completed. For years, my father’s death was a mystery, and it didn’t seem like we were going to get any answers.

Sometimes I ask myself: how can that be?

He was the first person in the room to crack a joke. He loved taking road trips with my mom and they travelled all over North America together. 

In January 2017, my father Ramesh Karnick was taken to the hospital in an ambulance after losing consciousness. My mother, Sandhya, was his full-time caregiver and was used to tending to him when his sugar was too low or when he had other health issues, but this was different. It was their 45th anniversary, but he didn’t respond when she called him to the table for lunch.

It seemed as if he had a stroke, but his medical team told us that wasn’t the case. He went into a coma for about three weeks. During that time, the medical team performed all kinds of tests to find out what was wrong, including a brain biopsy.

It was frustrating and even maddening because we would walk into the ICU full of hope that today would be the day we would find out what’s wrong with him. That day never came. There was a room at the hospital where medical staff met with the families of patients — sometimes it was to explain the results of a test, sometimes it was to tell them that their loved one was going to die. I lost count of how many times my family went into that meeting room and were told that his condition could be the result of something, but they weren’t certain. 

After his death, we waited six months for my mother to receive a letter saying the autopsy couldn’t be completed because my father’s body had antibiotic-resistant bacteria that could endanger the pathologist. The hospital sent samples of his brain to another hospital where a neuropathologist could examine those samples. 

I made requests with the hospital archives to get that neuropathologist’s report. There were so many forms to fill out to prove that I was a blood relative trying to find answers. It took months for me to get to that final consultation report and then I was told I wasn’t allowed to see it. Hospital archives would not release the report without a written request from my physician to prove that I needed the information for medical reasons.

So, more waiting. This time for my family doctor to write a letter saying that I needed the report for his own medical records about me. Great. Now I can see the report, right? Nope. I had to get my mother to consent for me to see the file. Finally, I would be able to see the consultation report. But not right away. 

Hospital archives could not send the file digitally because there was an issue with their fax machine. Yes, people still use them. I could have gone to the hospital to get the file, but infection rates were soaring at the time and I didn’t feel comfortable going to a hospital to get paperwork.

I finally received the envelope in the mail in mid-June. The report said the cause of death was difficult to determine. So, again, inconclusive? Not entirely. 

While the neurologist’s report didn’t point to a specific cause of death, it explained that there was something in his brain that could be responsible: FXTAS or Fragile X syndrome. It is a genetic condition that can cause some of the health issues he was dealing with in the past years of his life, including loss of mobility. After getting that report, I am waiting to be seen by a genetic counsellor to find out more.

This isn’t exactly the answer I was looking for, but I was hoping to find out if there was any way I could be on the same path as him and how I could avoid it. Since he died, I had given birth two boys, and I wanted answers for them. My mom said she felt the same way. “It doesn’t change anything, but at least we have something,” she said.

After five years of runaround, forms and bureaucracy while grieving for my dad, I’m tired and confused. I appreciated how hard the staff in the ICU and the neurology department who worked on my father’s case, and the care and time they took to explain the results of tests to us even when they didn’t have a clear result. But it didn’t change how I felt about the lack of answers. 

LISTEN | Sonali Karnick has spent years trying to answer the question: how did her father die?

After my story aired on White Coat Black Art, I received dozens of messages from people who were also seeking answers about losing loved ones to mysterious or complicated health problems. I have offered my support to those who continue to fill out paperwork in the hope of getting any kind of answer. I also heard from people who just didn’t have the emotional energy to keep searching, which is completely understandable for me now after what I went through. 

As for me, I’ll pursue the genetic tests, but that can’t be my focus after so many years of exhausting pursuit. My father’s absolute joy in life was his family — that’s a legacy I intend to keep and pass on to my children.

Sonali Karnick is the host of All in a Weekend and Our Montreal.

Do you have a strong opinion that could add insight, illuminate an issue in the news, or change how people think about an issue? We want to hear from you. Here’s how to pitch to us.