Nine months before Jessica Barnett died at 17, her neurologist dismissed her fainting spells and seizure-like episodes as psychological. “There’s nothing wrong with you. Go home and learn how to breathe through this,” he said. To her mother, Tanya, he added, “Don’t waste your money on an ambulance.”

That set the Barnett’s adrift. After five years of medical tests, one diagnosis of Long QT Syndrome (LQTS) from a rural medical facility — which specialists at the urban hospital dismissed — and several ambulance trips to the hospital, the Barnett’s no longer knew what to do.

Jess started fainting at age 12. She would stop breathing, her lips would turn blue. They looked like seizures and Jess was put on epilepsy medication. It made no difference. A few years after the fainting started, Jess’ grandmother told Tanya about an article on Long QT Syndrome. Tanya says the hair stood up on the back of her neck. She knew this was what her daughter had.

Though Tanya pushed neurologists in Halifax to look for Long QT Syndrome, testing consistently turned up negative. A test at a rural clinic that confirmed the presence of LQTS, but the findings were dismissed by city specialists.

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Jessica’s parents were in Toronto at a gymnastics meet with their younger daughter when Jess’ boyfriend called. She was having another episode. A bad one.  Paramedics were trying to revive her. “We knew in our hearts it was long QT syndrome. We knew that’s what she died of even before we were told,” says Tanya.

Genetic testing for Jessica, postmortem, confirmed that she did indeed have LQTS. Since LQTS is an inherited syndrome, the whole family was tested, and it was then discovered that Jess’ father also had LQTS, but was asymptomatic.

Unfortunately, the confirmation came too late. Correct diagnosis, medication and a defibrillator would have kept Jessica alive.

“Long QT Syndrome, arrhythmia syndromes are not rare,” says Tanya. “We asked to meet with the doctors again. We wanted reassurance that they were taking steps to ensure this didn’t happen to another family. This is how we find meaning in Jess’ death. We wanted to be part of the process that would make healthcare safer. Unfortunately, we were denied that.”

Calls to the hospital CEO to ask for a meeting with doctors were rebuffed. The Barnett’s felt that suing was the only way for them to get the answers they needed. In preparation for the suit, Tanya cross-referenced all Jessica’s medical records. She learned one of Jess’ tests had never been looked at by the cardiologist, though he insisted he had reviewed them all and all were negative. The results sat in the GP’s office because the hospital policy was to send them only to the GP. That practice has since changed.

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Tanya also found a study showing how most physicians and cardiologists fail to correctly diagnose LQTS from an ECG a majority of the time. The study concluded that electrophysiologists, specialists in electrical issues of the heart, should be diagnosing long QT syndrome until cardiologists were retrained. The medical examiner report confirmed that Jess’ tests confirmed long QT syndrome. Five of Jess’ seven test results were misread.

“Jess died due to misplaced paper work, misread test results and indifference,” says Tanya.

The two-year lawsuit was a “degrading, demoralizing, disheartening and frustrating process,” that ended with the Canadian Medical Protection Agency (CMPA) that defends physicians, settling out of court.

It took producing a video about Jess’ story, as well as media attention, to get the hospital’s attention. Finally, the hospital CEO granted the Barnett’s a meeting. It was 18 months after the litigation ended. Five years after Jessica’s death.

At that meeting, the Barnett’s discovered the physicians had no idea that they had repeatedly requested to meet with them over several years. The CEO had never told them. “The physicians jaws dropped open. They were thinking; if we’d actually spoken to this family we may not have had to go through litigation,” says Tanya. “They were right. All we ever wanted was to have our questions answered and know they were making changes so this wouldn’t happen again.”

One physician was very forthcoming, detailing the changes he had made due to Jess’s death; how he was diagnosing more effectively and practicing differently. Tanya said these were great gifts to grieving parents.

She is now a member of Patients for Patient Safety Canada.  Patients for Patient Safety Canada is a patient led program of the Canadian Patient Safety Institute.  Patients for Patient Safety Canada works to ensure that healthcare organizations and systems include the patient and family perspective when making decisions and planning safety and quality improvement initiatives.

“I became a mediator because of Jess’ death, because of the litigation system, because of our case. I don’t believe litigation is the correct process, although it’s the only one right now that is open to us. I believe a mediated dialogue of sorts, a restorative approach to handling a medical harm would be far more just for everyone involved, including the physicians.

“I want to focus on post-error processes,” adds Tanya. “Through the litigation we found one of the physicians was having some mental health issues around Jessica’s death. The system was frustrating. We had two parties who were hurting that could be helped and healed if we could have come together. Mistakes happen. It’s what you do with the mistakes that are necessary to create a safer healthcare system.”

She wants physicians to really listen to patients and their loved ones. She calls for a more collaborative, inclusive system to address the current power imbalance between patients and physicians.

“This needs to change. It’s a cultural shift within medicine. A leap of faith for physicians, and it would take great courage on the part of healthcare. But I believe it is so worth the leap.”