Death has a habit of early arrival in the family tree of Dardanel "Dardie" Robinson.

The Oregon-based paralegal grew up with the unexpected deaths of various great-aunts and uncles, aunts and uncles, her father, and then cousins. After she started a family, Robinson lived with the lurking question of when her time would come, and what it would mean for her six children.

Death didn't come for her, though. In late 2014, it took her son Daniel Wiggins. The fourth child, he was only 29. But it it wasn't totally unexpected. There was a warning sign two weeks before his death.

"He went into the ER with shortness of breath," said Robinson, 60. "And they said you're fine, it's anxiety, and they sent him home."

But Daniel's death -- and that of so many of his relatives -- is no longer unexplained. The "Molecular Autopsy Study" being conducted by the Scripps Translational Science Institute (STSI) found that her son carried a genetic variation that causes a dangerous electrical irregularity in the heartbeat known as "long QT syndrome."

More More information about the molecular autopsy study can be found at j.mp/mautopsy.

Robinson carries the mutation herself. She's looking into getting a defibrillator implant, to restore the heart rhythm in case the irregularity kicks in. And she's contacting as many relatives as she can find to warn them so they can get tested for the variant.

Robinson told her story Friday at the ninth annual Future of Genomic Medicine conference, held in La Jolla.

The molecular autopsy program starts with pre-screened death cases submitted by the San Diego County medical examiner. STSI researchers select the most promising unexplained death cases, where genomic technology might provide an answer.

While neither Robinson nor her son lived in San Diego at the time of his death, the case, with its multigeneration implications, was deemed compelling enough to be accepted. And the program is now being expanded to other parts of the country.

So far, about 30 cases have gone through the molecular autopsy program, said Ali Torkamani, an assistant professor at the Scripps Translational Science Institute. Led by cardiologist-geneticist Dr. Eric Topol, STSI is an alliance between Scripps Health and The Scripps Research Institute to bring in advanced technology for health care.

Half of the 30 cases have yielded possible genetic causes, and in six of those 15 the link is firm, Torkamani said.

Robinson's talk Friday is especially significant, Topol said. "Nobody has ever told the story of what it means to them."

Living with no answer

Heart disease causing sudden cardiac arrest was the given cause of these early deaths, Robinson said in an interview before her talk. So her relatives took preventive steps to keep their hearts healthy, and free of blockage-forming arterial plaques.

"It's (lowering) cholesterol. It's keeping your arteries clean. I do half-marathons and 5Ks. I walk, I do my 10,000 steps a day," she said. "And yet people were still dying."

The concern mounted when her cousins started dying in 1989.

"I still had young children at home," she said. "So it was very important that the kids were going to be OK, because I was the sole custodial parent."

Explaining this family history to the people who initially handled her son's death was difficult, she said. Their assumption was that he must have "taken something."

Yet Daniel Wiggins didn't use drugs, and while he had been despondent previously, she said, his life had turned around. He grew up with a learning disability, surrounded by more successful siblings and frustrated by his limitations. Yet by the time he had died, he had found his role in life through his artistic creativity.

Robinson said it was over a month before she got the autopsy. "Daniel died at the University of Alabama at Birmingham. The pathologist who did the autopsy -- and I've thanked him many times — wrote that he thought it was a sudden (cardiac) dysrhythmia that led to formation of a clot. Nobody had ever said anything about dysrhythmia."

With that clue, Robinson put her paralegal expertise to work. As a paralegal, Robinson said she's used to finding experts of various sorts.

"If I don't know about something I read all the expert material and educate myself, because I educate the attorneys," she said.

Persistent paralegal

Robinson said she discovered the STSI molecular autopsy study through an article in the Los Angeles Times.

But since it was limited to San Diego County, it took some persuasion to get permission.

In early 2015 she discussed the case with Sarah Topol, a registered nurse in the program and Eric Topol's daughter.

"I was desperate, because I knew they were going to do only 100 people in this study," she said. "And I was determined that my son was going to one of those 100 people ... I was like a dog with a bone."

"I sent her medical records for Daniel, medical records for my brother, medical records for me, and in June she emailed me back that they were going to accept our family into the study. It was like winning the lottery."

This January, she heard from Sarah Topol, who wanted to contact Robinson's cardiologist. Robinson hadn't received an intensive heart exam since 2005, when her heart was found to be in great shape. But that was a test of the heart's physical condition, she said. The possibility of an electrical rhythm defect hadn't been investigated. And that's what was found in her genome.

"I cried," Robinson said. "And then I immediately contacted all my kids and said you need to be tested."

Robinson said she recently shared the information with a cousin, who had begun experiencing the same symptoms her son had experienced 15 days before he died.

"I said you need to get this information to your doctor, because it isn't your heart's structure, it's electrical. And I told him to call Sarah."