Sepsis - the silent killer

The son of Irish parents, 12-year-old Rory Staunton dived for a ball during gym class in his New York school in March 2012. He cut his elbow. Five days later he was dead.

His parents, Ciaran and Orlaith, from Mayo and Louth respectively, talk of how the wound wasn’t cleaned before being covered and of how he wasn’t seen by a nurse.

Rory woke that night with a pain in his leg and a very high temperature.

Seen by a paediatrician next day and now with mottled skin and stomach tenderness, a stomach virus was diagnosed and his parents assured that there was ‘nothing to worry about’.

A subsequent visit to an ER department led to blood tests being done and a diagnosis of dehydration.

At home next morning (Thursday), Rory continued to complain of pain. Ciaran and Orlaith repeatedly told his paediatrician that Rory wasn’t eating and that they couldn’t control his temperature.

On Friday they brought Rory back to hospital and, gravely ill by now, he was admitted to ICU. Eventually they were told that Rory was in septic shock. He died the following Sunday.

BACTERIAL INFECTION DAMAGED ORGANS

A bacterial infection had entered his blood through the cut on his arm. The blood tests taken in ER had shown up an abnormality, but this information hadn’t been communicated to the emergency room that day, Ciaran Staunton says.

“By that time the infection would have been causing inflammation that was damaging Rory’s tissues and organs.”

Once misleadingly called ‘blood poisoning’ or a ‘bloodstream infection’, sepsis essentially occurs when the body goes into overdrive while fighting an infection, injuring its own tissue.

“The hospital made no attempt to follow up with us, his family, to inform us that he was seriously ill,” Ciaran continues.

“His paediatrician didn’t follow up with the hospital either. Rory died on Sunday evening. It is impossible to even attempt to capture the misery his death has brought us. The two words, ‘never again’, now sum up our overwhelming feelings after Rory’s death. We hadn’t heard of sepsis before he died. Then we discovered that sepsis is the leading paediatric killer worldwide. We don’t want this tragedy to happen to anyone else.”

The Stauntons – Ciaran, Orlaith and Rory’s sister, Kathleen – now work round the clock to raise awareness of this devastating killer and improve procedures in paediatric emergency rooms to ensure that no other family suffers this kind of loss.

“Our son should not have died. Early recognition of the illness would have saved him – we are certain of that.”

RORY IS STILL ACHIEVING

Rory, his parents say, had already achieved a lot in his short life.

Always one to stand up for those being bullied, he led a Spread the Word to End the Word campaign in his school to end the use of the word ‘retard(ed)’ in everyday language, for example.

He had also met President Barrack Obama and written to North Korea’s dictator asking why his people are treated so badly.

“Rory was set to achieve great things,” says Ciaran. “If his death and getting the word out there about sepsis saves even one child, then Rory will still have helped to achieve great things.”

COULD IT BE SEPSIS? ASK!

FOUR WORDS TO SAVE A LIFE

While sepsis is the leading cause of death from infection worldwide, it is not always given as the cause of death on death certificates.

“That’s probably why fewer than half of adults are aware of the condition. What shocked me was that I had never heard of it until my son died,” Ciaran says.

“Sepsis causes 258,000 deaths in the US each year. That is huge, yet so few people know about it. Rory’s life could have been saved if there had been more awareness.”

The Rory Staunton Foundation was set up in 2013 to campaign for ‘Rory’s regulations’ to be implemented. The Stauntons organised the first-ever sepsis hearing in the United States Senate in Washington DC, also convincing New York’s Governor to implement mandatory sepsis protocols, a move that is already saving 20 lives every day in the New York State.

They spoke in the past, too, at a meeting of the Intensive Care Society of Ireland ahead of the launch of the Irish National Sepsis Management Guidelines.

These directives were recommended by HIQA following the death of Savita Halappanavar in 2012.

“If the guidelines are followed,” Ciaran said at the time, “you’ll start saving lives immediately. Because once sepsis has been ruled out, most other things can be dealt with. You have to be looking out for it. That’s why I say to parents to ask: ‘Could it be sepsis?’ Those four words could save your child’s life.”

Both Orlaith and Ciaran are now relieved that their long journey for justice is bringing positive legislative change in the US and elsewhere.

“Infection prevention is the single most important thing we can do to end unnecessary deaths from sepsis,” says Ciaran.

It has meant a lot to the Stauntons that the New England Journal of Medicine recently published its own report on sepsis, confirming that Rory’s sepsis protocols are resulting in faster treatment for sepsis and lower mortality rates.

“To receive such a review in one of the most prestigious peer-reviewed medical journals in the world was a very big day for our little Foundation,” Ciaran says. “It gives us the most powerful tool yet to continue the campaign for mandatory sepsis protocols.”

In May 2017, Ciaran Staunton also addressed a World Health Organisation panel on sepsis, ahead of a WHO sepsis resolution being passed.

“It was recommended unanimously by the WHO executive board and will improve the diagnosis and treatment of sepsis in all 194 UN member states. We are enormously proud to be a part of the collective effort to increase awareness about sepsis – the biggest killer of infants and children worldwide, claiming six million lives each year,” says Ciaran.

ORLAITH STAUNTON – RORY’S MUM:

“We painfully discovered after Rory died that he hadn’t died from something rare, as we were initially told, but instead had died of sepsis.

“The awful truth for us is that those we entrusted with Rory’s care didn’t do what they should have been doing. They should have been looking for sepsis, they didn’t and Rory died.

“If they had diagnosed sepsis and treated him with broad-spectrum antibioticis and IV fluids he would be alive.” CL

Note: blood poisoning is not a medical term, but is often used to describe sepsis or septicaemia.

www.rorystauntonfoundationforsepsis.org

Sepsis symptoms in older children and adults

Early symptoms:

Later, if not treated:

Early detection and treatment with broad-spectrum antibiotics is the key to survival, health professionals say.

>> Irish situation

The HSE now has a National Sepsis Learning Programme for staff and it launched its 2016 National Sepsis Report this month, which logs improvements made in this country since Savita Halappanavar’s death.

Savita died one week after being admitted to hospital after miscarrying and going into septic shock.

“Sepsis is an extraordinary killer,” said Minister Simon Harris at the report launch.

“We know that timely intervention is key. The quicker you detect and treat the patient, the more likely that patient is to survive.”

Staff are now trained to be more ‘sepsis aware’, he said, and the number of deaths due to sepsis have dropped by 20% since national guidelines on sepsis were published in 2014.

Sepsis ‘leads’ have been appointed in all hospitals and the rise in detections of sepsis in this country was due to ‘greater vigilance, education, awareness and training’, says Dr Vida Hamilton of the HSE.

In 2016, 14,000 cases of sepsis were detected and recorded in Ireland – a 67% increase in cases, compared with 2015.

In the past, global hospital staff often struggled to identify sepsis early. Many symptoms – raised heart and respiratory rates, fever or chills, pain, are common in many conditions.

Around 80% of infections come from outside the hospital. Sepsis can lead to amputation as well as shock, organ failure and death.

“Sepsis is a common, time-dependent medical emergency,” says a HSE spokesperson.

“I’t can affect a person of any age, from any social background and can strike irrespective of underlying good health or concurrent medical conditions.”

In the UK, a 2009-2012 enquiry into maternal death and morbidity reported that almost a quarter of women who died had sepsis.