Rory’s Legacy

The parents of Rory Staunton, a brilliant and passionate Irish-American boy who died of sepsis at age 12, are on a mission to make sure that no other child is felled by this fatal infection.

“If I’d known about sepsis, I would have looked for sepsis,” says Orlaith Staunton whose 12-year-old son Rory died on April 1, 2012 from the deadly medical condition. “I knew about meningitis, I checked him for meningitis, I checked him for a bug bite, but I didn’t know about sepsis.”

Rory died at NYU Langone Medical Center in Manhattan five days after cutting his elbow during an indoor basketball game at school on Wednesday, March 28. He became ill overnight and Orlaith brought him to the pediatrician on Thursday, March 29.

Despite finding classic signs of sepsis (low blood pressure, pain, fever and mottled skin), the pediatrician did not see that Rory was already in the throes of what would prove to be an overwhelming, toxic response to a strep infection in his bloodstream, most likely acquired through the cut to his elbow.

The pediatrician diagnosed a stomach bug and referred the family to the ER at Langone. There, the ER doctor concurred with the mistaken diagnosis and sent Rory home. This inability to revisit the initial diagnosis was recently singled out by Forbes as a major factor in medical errors.  “Once the physician made a diagnosis, she or he did not revisit it or challenge it.”

In addition, the doctors sent Rory home without reviewing his lab results, which showed massive numbers of immature white blood cells in his system — a known sepsis indicator.

Rory was readmitted to Langone ICU on Friday, March 30 where a different rotation of ER  doctors could see he was gravely ill. But it was too late. Rory died at 6.29 p.m. on Sunday, April 1, 2012. His sweat was still warm as his parents cradled his body.

“We had never heard of the word sepsis until our son was dead. If we had been able to ask, ‘is this sepsis?’ he could have been treated,” says his father, Ciaran. “We didn’t even know sepsis existed. I didn’t know sepsis could kill our child until it was too late.”

His parents were also unaware of the lab report until the hospital bill arrived at the house the following week. “The bill arrived with Rory’s mass cards,” says Ciaran.

Orlaith, originally from Drogheda in County Louth, and Ciaran, originally from Westport in County Mayo, and their 11-year-old daughter Kathleen have spent the past 10 months trying to adjust to life without Rory.

From their home in Sunnyside, Queens, they have also spent the past 10 months shaking the U.S. medical establishment from head to toe in an effort to make sepsis, like meningitis and heart attacks, part of an automatic checklist for patients and medical providers.

“Orlaith knew to check Rory for meningitis. And we know how many lives have been saved by prompt treatment of meningitis. We want people to know sepsis is a killer,” says Ciaran. “Sepsis killed our son.”

Sepsis is an extremely serious condition caused by the body’s devastating immune response to infection. The body produces chemicals to fight the infection, in Rory’s case Group A Strep, but chemicals themselves cause widespread inflammation which can fatally damage the organs.

It is a common but almost virtually unknown killer.  It is the single biggest cause of death in U.S. intensive care units and kills 200,000 Americans each year, more than lung cancer, stroke and breast cancer combined. Yet a 2010 report found that 70 percent of Americans did not know about sepsis.

Dr. Kevin J. Tracey, president of the Feinstein Institute for Medical Research at North Shore-Long Island Jewish Health System, which commissioned that report, says an early warning sepsis checklist is long overdue.

Speaking to The New York Times in 2010, Tracey said awareness was key to reducing sepsis fatalities and that it could be identified with a simple checklist. “If someone has an infection on the arm or leg, and then develops a fever, or starts to feel sick all over,” he said, “someone should say, ‘I’m concerned about sepsis.’ ”

Two years later, despite Rory’s displaying exactly those symptoms, the Stauntons would lose their son because the initial attending physicians were not concerned about sepsis.

The Stauntons have lobbied state, federal and local officials to put such a checklist in place. “We want parents, doctors and medical workers across the U.S. to stop and say “Could this be sepsis?,” says Ciaran.

They accomplished a major step towards this goal in January when New York State Governor Andrew Cuomo cited Rory’s case as the catalyst for sweeping new sepsis policies in New York hospitals. The New York Times reported that Rory’s death could save up to 8,000 lives a year in the state alone.

The new policies include a countdown clock to begin treatment within an hour of diagnosis and requires regulators to develop new procedures for parents to “play a meaningful and informed role” in decisions about their children’s care. Both initiatives are a direct legacy of Rory’s tragic death.

Ciaran says he hopes other state governors and federal agencies will follow suit. “These measures  will make the difference whether people live or die, and Cuomo is clearly saying that he wants to see people living,” he says.

At the Feinstein Institute, Dr. Tracey believes the Stauntons will change the world. Speaking to Jim Dwyer at The New York Times in December 2012, Dr. Tracey said: “We are with sepsis where we were with heart attack in the early 1980s. If you don’t think of it as a possibility, this story can happen again and again. This case could change the world.”

Dwyer — who has written five articles on Rory’s case and knows the Stauntons — agrees. He says Rory’s story could transform the medical establishment.

“There can be a kind of vindictive truth telling and a kind of a redemptive truth telling and I think that one of the things that have come out of this terrible, terrible episode is that Ciaran and Orlaith have moved the world forward with their redemptive truth telling,” he says.

Dwyer met Rory in the summer of 2011 when the family stayed at his house in the Poconos. He described Rory as “one of those people who you would never forget, even after one meeting. I knew I would never forget him and I would say the same about his sister Kathleen. Two powerful young people.”

Like many who know the Stauntons, Dwyer was shocked at Rory’s death, and the speed and the severity of his decline.

Dwyer says it was a worst-case nightmare of bad decisions and bad luck. “Every single possible bad thing that could happen, happened, to Rory and resulted in accelerating his decline. Nobody intervened when intervention might have helped. Every time there was a chance to do something for Rory there were steps that weren’t taken and people who didn’t know that there was a problem.

“A healthy 12-year-old boy dying on any occasion would be shocking but to die in one of the country’s leading medical centers is just…” Dwyer’s voice trails off.

Since Rory’s death, the Stauntons have set up The Rory Staunton Foundation and created a Facebook presence to raise awareness about sepsis. They have appeared on The Today Show and Dr Oz, and radio and TV shows overseas. They decided to go public on their private trauma to try and ensure that no other parent or family has to walk in their shoes.

“There aren’t even any words to describe what has happened to us,” says Ciaran. “We have words for orphans and widows but no words for parents who lose their child.”

Ciaran Staunton is well known in the Irish American community for his involvement in immigration, care for the elderly and the Irish peace process. So long a campaigner for others, today he campaigns in honor of his son. He is driven by the knowledge that Rory would have wanted them to do this. “Rory would have been the first one fighting this battle,” he says. “He hated injustice on any scale.”

Rory’s story has touched hundreds of thousands of people. There were so many comments (1,659) on Dwyer’s first New York Times piece, “An Infection, Unnoticed, Turns Unstoppable,” that Dwyer himself weighed in.

“It was the first time I got involved in back and forth with comments,” he says. “There were over a million hits on that first story about Rory and there was such a vigorous debate going on between medical and non-medical people. It was one of those stories that really shifted the ground and was one of the highest ever in reader reaction.”

The publicity has already saved lives as parents around the country look at their sick children and ask “Could this be sepsis?” “One woman wrote to us to say that her 12-year-old son was standing next to her at the pool because of Rory,” says Ciaran.

The Stauntons are also working on a Discovery Channel documentary about medical errors with Sully Sullenberger, the “Miracle on the Hudson” pilot. This last is particularly poignant. Sully was Rory’s “ultimate hero,” says Orlaith. “He kept his book beside his bed.”

Rory’s story has been highlighted at major conferences in the U.S. including an invitational sepsis symposium led by the New York State health commissioner Nirav Shah in October 2012. Shah said later that one statistic from that day has stayed with him — “the Staunton family lost 25 percent of their family to sepsis.”

In November 2012, Ciaran spoke at the fifth international conference on medical errors at Johns Hopkins Medical Center in Maryland. One of the organizers, Dr. Gordon Schiff, said that Rory’s story was so compelling that they added a special session to focus on his case.

Orlaith says she wants to see a clear communication path between the doctor in charge and the parents or guardians.

“Pediatric emergency rooms are scary places for children and family,” she says.  “Parents need to have a clear communication channel available to them. They need to be informed as to who is the doctor in charge of their child’s care, what blood tests or other tests have been ordered, their results, the diagnosis being made and any other possible diagnosis being considered and what change in the patient’s condition would require that they return immediately to the ED.  They also need to be given a telephone number for follow-up questions should changes they are concerned about take place.”

For Ciaran, the alternative is unthinkable. “We don’t want any other families sitting on The Today Show explaining how their son died.”

Dwyer says Orlaith and Ciaran’s efforts to raise awareness about sepsis and work for change in the pediatric ER are inspirational.

“There is nothing we can do that will redeem the death of Rory, but Orlaith and Ciaran have vindicated a powerful sense of justice and right and wrong and fairness that was evident in Rory even as a young boy,” Dwyer says. “They say that children teach their parents, and Rory’s lessons for Orlaith and Ciaran have shown him to be the powerful and wise instructor he was destined to be in life. He has fulfilled some of his destiny in the work that Orlaith and Ciaran have done.”

UPDATE: On January 29, Governor Cuomo announced that New York would lead the nation in fighting sepsis, with new requirements for hospitals to adopt best practices, and make major improvements in pediatric care though a set of rules titled Rory’s Regulations. Read the full release here.

Kelly Fincham teaches journalism at Hofstra University on Long Island where she specializes in social and digital media.