In March 2012, 12-year-old Rory Staunton cut his arm during a basketball game at school. By midnight, he was vomiting, running a high temperature and felt pain in his leg.
His parents, Orlaith and Ciaran Staunton, who are from Louth and Mayo respectively, brought Rory to his paediatrician in New York the next day.
The doctor assured them that it was most likely a stomach bug that had been circulating, although Rory was taken to hospital just to make sure. There, medics concurred that the best thing to do was drink fluids, take painkillers and go home. Within 72 hours, Rory had died from severe septic shock.
Sepsis, or septicemia as it is also known, is a common but life-threatening condition that can slip by undiagnosed due to the initial appearance of flu-like symptoms. (See http://iti.ms/1f5asm7.)
It’s triggered by the body’s response to bacterial infection, causing a widespread inflammation that damages tissues and organs. In Rory’s case, bacteria had penetrated his blood through the cut on his arm.
The Stauntons have been campaigning to raise awareness of the condition ever since.
Sepsis occurs more frequently than heart attacks or strokes, and claims more lives than any form of cancer. In 2013, the most recent year for which figures are available, approximately 60 per cent of hospital mortality in Ireland had a diagnosis of sepsis or infection.
Lack of awareness
Yet, despite being the leading cause of death from infection worldwide, fewer than half of adults are aware of the condition. One reason the term is not better known is because when someone dies from sepsis that arose as a result of pneumonia or severe burns, for example, sepsis is not always given as the cause of death.
“What shocked me is that I never heard of it until my son died,” says Ciaran Staunton.
“Sepsis causes 258,000 deaths in the US in just one year. To put the magnitude of that in perspective, Ebola has claimed 5,000 lives worldwide. Yet the latest polls in the US say that more than 60 per cent of people have never even heard of the word ‘sepsis’.
“For me, the hard part is knowing this is avoidable. It’s not like getting cancer or being hit by a car. This boy’s life could have been saved with just the slightest bit of awareness.”
In the 1980s, Staunton says, it took the death of film star Rock Hudson for the public to start paying attention to Aids. He wonders what it’s going to take for sepsis to come into focus, feeling dismayed that the campaign is left to those whose lives have been irrevocably altered by it.
Signs of progress
There are, however, signs of progress. In 2013, the
Rory Staunton Foundation
initiated the first US senate hearing on sepsis. It also led to the introduction of ‘Rory’s regulations’, a set of protocols concerning the diagnosis and treatment of sepsis across New York State, including better training at medical schools and improved communication between staff and parents in paediatric emergency rooms.
This is the first legislation of its kind in the world and, Staunton says, is already saving the lives of 20 New Yorkers every day.
Then there are the personal stories that humanise those numbers. Many parents have contacted the Stauntons to say that their child was about to be sent home from hospital before they asked, “Could it be sepsis?”
“Those four words are now saving lives because people have heard about Rory,” says Staunton. “The first time we got an email saying, ‘I want to thank you for saving my son’s life,’ it came from a woman who said, ‘Because of your 12-year-old son, my 12-year-old son is alive and sitting beside the pool.’
“My daughter, Kathleen, couldn’t help wondering, ‘Isn’t it a pity someone didn’t do that for Rory?’ The reality is that if we had ever heard of sepsis, those four words would have saved our son too.”
Saving lives from sepsis depends on early detection. From the moment of infection, every hour counts and antibiotic treatment is required as soon as possible.
“The first 24 hours are crucial,” says Staunton. “Even those who have been saved will often lose limbs or suffer brain damage because of it. What we’ve been saying to various agencies is that if you look for sepsis only in emergency situations, it’s already too late.
“Trying to save a person in ICU from sepsis is like trying to save a burning house after the roof has fallen in.”
Guidelines
In November, the Stauntons spoke at a meeting of the
Intensive Care Society of Ireland
ahead of the launch of the Irish National Sepsis Management Guideline. These directives, published by the
Department of Health
, were recommended by the Health Information and Quality Authority (Hiqa) following Savita Halappanavar’s death from sepsis in 2012.
Staunton believes Ireland can play a big role in campaigning for further awareness within the UN and with the World Health Organisation. He and his wife have urged the Department of Health to make sure there is a sepsis protocol in place whenever money is given to healthcare agencies around the world.
“If you do that, it means you’ll start saving lives straight away because once sepsis has been ruled out, most other things can be dealt with,” Staunton says. “Sepsis is very easy to detect, but only if you’re looking for it.”
