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

This first-person column is from Sonali Karnick, a CBC reporter in Montreal who seeks answers to her father’s death. For more information on CBC’s First Person Stories, please see frequently asked questions.

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

My mom, sister, and I were standing in the hallway outside her room after saying our final goodbyes. As we stood in the hallway of the hospital, wiping away our tears, my father’s neurologist urged us to request an autopsy.

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

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

When the autopsy papers came back, they said “not conclusive” in French. There was a note in the brief report that said a sample of his brain tissue had been sent to a neuropathologist at another hospital for consultation.

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

Sometimes I wonder: how is this possible?

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

Ramesh Karnick, right, with his wife, Sandhya, in 2015. (Submitted by Sonali Karnick)

In January 2017, my father Ramesh Karnick was taken to hospital by ambulance after he lost consciousness. My mother, Sandhya, was his full-time caregiver and used to take care of 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 answer when she called him to the lunch table.

It looked like he had had a stroke, but his medical team told us that was not the case. He fell into a coma for about three weeks. During this time, the medical team performed all sorts of tests to find out what was wrong, including a brain biopsy.

It was frustrating and even exasperating because we entered intensive care hoping that today would be the day we would find out what was wrong with him. That day never came. There was a room in the hospital where medical staff met with patients’ families – 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 walked into that meeting room and was told their condition could be the result of something, but they weren’t sure.

After his death, we waited six months for my mother to receive a letter saying that the autopsy could not be performed because my father’s body contained antibiotic resistant bacteria which could endanger the pathologist. The hospital sent samples of his brain to another hospital where a neuropathologist was able to examine these samples.

I made requests to the hospital archives to obtain the report of this neuropathologist. There were so many forms to fill out to prove I was a blood relative trying to find answers. It took me months to get to the final consultation report and then I was told I had no right to see it. The hospital records would not release the report without a written request from my doctor to prove that I needed the information for medical reasons.

A man dressed in 70s fashion kisses a young girl.
Sonali Karnick, left, is still trying to find out why her father died five years ago. In this photo, he kisses three-year-old Sonali. (Submitted by Sonali Karnick)

So no more waiting. This time to have my family doctor write a letter saying I needed the report for his own medical records on me. Great. Now I can see the report, can’t I? No. I had to get my mother’s consent for me to see the file. Finally, I could see the consultation report. But not right now.

The hospital archives were unable to send the file digitally because there was a problem with their fax machine. Yes, people still use them. I could have gone to the hospital to get the file, but infection rates were skyrocketing at the time and I didn’t feel comfortable going to the hospital to get papers.

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

Although the neurologist’s report did not indicate a specific cause of death, he 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 problems he faced in the last years of his life, including loss of mobility. After receiving this report, I am waiting to be seen by a genetic counselor to learn more.

A bride and groom dressed in traditional Indian attire are flanked by an older woman and a man holding a cane.
Sonali Karnick, second from left, on her wedding day with her parents and husband. (Submitted by Sonali Karnick)

Not exactly the answer I was looking for, but I was hoping to know if there was a way I could be on the same path as him and how I could avoid it. Since his death, I had given birth to two boys, and I wanted answers for them. My mother said she felt the same. “It doesn’t change anything, but at least we have something,” she said.

After five years of hassle, forms and bureaucracy while mourning my father, I am tired and confused. I appreciated the hard work of the ICU and neurology staff who worked on my father’s case, and the care and time they took to explain the test results to us. even when they had no clear outcome. But that 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?

Black Art White Coat26:29Sonali’s story

On his 45th wedding anniversary, Ramesh Karnick was at home with his wife, Sandhya, when he appeared to lose consciousness. Ramesh was in a coma for five weeks before he passed away. His daughter, Sonali, has spent years trying to answer the question: how did her father die?

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

As for me, I will pursue genetic testing, but that cannot be my goal after so many years of exhausting research. My father’s absolute zest for life was his family — it’s a legacy I intend to keep and pass on to my children.

A smiling woman embraces her two children who make wacky expressions.
Sonali Karnick with her two children. (Submitted by Sonali Karnick)

Sonali Karnick is the host of Tous d’un weekend and Notre Montréal.

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