‘Rory’s Regulations’ help to save 5,000 lives from sepsis

“At 6.20pm, on the first of April, our 5ft 9in hero, 12 years old, big, square shoulders and a red head on him, died.”

Ciarán Staunton, Mayo-born New York businessman and chairman of the Irish Lobby for Immigration Reform, struggles to hold back tears as he and his wife, Orlaith, tell the story to camera of how a minor scrape, a basketball injury, led to the death, in 2012, of their son Rory.

Dlí Rory: Dóchas Ó Neamh (TG4, tonight 8.30pm) recounts how one family's devastating encounter with streptococcus pyogenes, or sepsis, led to the introduction of new hospital protocols that the New York Times last month reported had contributed to saving almost 5,000 lives.

'Rory's Regulations', a set of procedural checks for sepsis, were implemented in hospitals across New York State in 2013. The move came as a result of lobbying by the Rory Staunton Foundation, established by the Stauntons in memory of their son.

Awareness

Its aim is to raise awareness of the often overlooked condition, caused by the immune system’s out of control response to infection, which kills more than 200,000 people in the US each year.

It is five years since the Irish American boy’s death, and almost four since this film, produced by Below the Radar TV, was first aired. But the programme, and the ongoing, life-saving initiative that came about as a result of the harrowing story it tells, are more than worthy of a second look.

The film recounts that Rory was initially sent home from NYU Langone Medical Centre with a diagnosis of a stomach virus; 24 hours later he was dead. “We didn’t know this creature, this killer on the loose that kills more Americans than Aids and a couple of cancers combined, was stalking [us],” Ciarán Staunton tells viewers.

“I did the check for meningitis, I did the check for tick bite, but I didn’t know about sepsis,” Orlaith Staunton says, a sense of hopelessness, guilt and unsaid what-ifs seeming to radiate from the screen.

Solace

“The word ‘why’, starts every sentence, starts every thought,” Ciarán says in the 30-minute documentary. But rather than just ask a question for which there is no acceptable answer, the family sought solace in action, and have campaigned relentlessly since their son’s death.

“We are determined to see lifesaving sepsis regulations (Rory’s Regulations) implemented in all 50 states by 2020. All Americans deserve the same right to live, regardless of the state they are living in”, the family’s foundation says.

And it's not just a US issue, a Cork University Hospital medic, Dr Brian O'Brien, interviewed in the film, estimates that there are 4,000 cases of sepsis in Ireland each year, and that between 20 and 30 per cent of these result in fatalities. "We can improve this, so we should put more emphasis on it in the eyes of the public," he says.

The deaths, from sepsis, of eight-year-old Richard de Souza at Midland Regional Hospital in Portlaoise in 2011, and of Savita Halappanavar at University Hospital Galway the following year, are also referenced in the programme.

“If you asked the public how she died,” Dr O’Brien says of Halappanavar, “I don’t think the word sepsis would be used in that conversation.”

But for Ciarán and Orlaith Staunton, the word sepsis is one that they want heard, loud and clear. They continue to campaign for raised awareness of the condition. “It has helped – in that we’ll always be Rory’s parents – so it has helped that we’re still doing something for him. But it’s partly an empty success, because he isn’t here to tell him about it,” Orlaith says.

Dlí Rory: Dóchas Ó Neamh is on TG4 on Wednesday, May 17th, 8.30pm