New York Times: Parents’ Fight Against Sepsis Reaches C.D.C.

Published: JimDwyerHeadshotNov2013March 5, 2014
The New York Times
Parents’ Fight Against Sepsis Reaches C.D.C.

By Jim Dwyer

There it was: an A to Z index on the website of the Centers for Disease Control and Prevention. One morning, Ciaran and Orlaith Staunton of Queens turned to the S page. Somewhere between seasonal flu and sexual health, they were sure, they would find sepsis. It is among the leading causes of death in the United States, taking far more lives than the best-known cancers or heart attacks or criminal violence.

Nothing.

Rory, 12, died in April 2012 after he was sent home from the emergency room at NYU Langone Medical Center with undiagnosed and untreated sepsis.

“Until Rory died, we had never heard the word sepsis,” Mr. Staunton said. “You will not find the word sepsis on the A to Z of the C.D.C.”

Sepsis is what happens when the body’s own responses to an infection spin out of control, destroying cells and blood vessels. This leads to shock, organ failure and death. The sooner treatment begins, the better the chances of survival. That and many other aspects of sepsis remain poorly understood. After a campaign by the Stauntons, the New York State Department of Health issued new regulations, which went into effect at the end of 2013, requiring hospitals to adopt techniques for early identification and treatment of sepsis. They are among the most rigorous regulations in the country.

In January, the Stauntons wrote to Dr. Thomas Frieden, who as director of the centers is one of the nation’s top public health officials. They detailed the research on successful approaches to reducing sepsis deaths. “The C.D.C. needs to demonstrate a leadership role in the education and treatment of sepsis,” they wrote, adding that the centers were “negligent in their duty to inform the public and to insist on sepsis protocols being in place at all medical facilities throughout the United States.”

They met with Dr. Frieden. Traveling with them was Dr. Martin Doerfler, the associate chief medical officer for the North Shore Long Island Jewish Health System, which includes 16 hospitals in and around New York City, and which has reduced its mortality rate from sepsis by 50 percent over the last five years.

“The C.D.C. has a whole pamphlet on children with cancer and serious infection,” Dr. Doerfler said. “And they die of septic shock. The words ‘septic shock’ aren’t used.”

There is an especially vexing issue with sepsis treatment: When a person shows certain symptoms suggesting the early stages of sepsis, the protocols call for administering antibiotics before it is certain the person has a bacterial infection. It can take up to 48 hours for a blood culture to reveal a specific bacteria. The mortality rate from sepsis increases by 7 percent for every hour that antibiotic treatment is delayed. But public health officials say that antibiotics are losing their effectiveness because too many patients who don’t need them are getting them, or are being given the wrong ones. Dr. Frieden released a report on Tuesday saying that about one in three prescriptions for urinary tract infections were erroneous, and that other mistaken antibiotic use was making it harder to treat an infection that causes severe diarrhea.

Was the new guidance from the centers in conflict with protocols for treating sepsis? Absolutely not, Dr. Frieden said, though he acknowledged there could be confusion. What New York State was doing, he said, made sense: Start the antibiotics, and then look at the results of the blood tests to see if they should be adjusted or stopped.

“Anytime someone has suspected sepsis, they should be evaluated promptly and treated promptly,” Dr. Frieden said. “And if you look at the very strong sepsis protocols out of New York State, they have in their protocol get the diagnostic work-up promptly, start treatment promptly, and have a systematic re-evaluation. And that’s exactly what we’re calling for.”

The agency is going to create a web page on sepsis, and consult with research centers and with New York State on the results of regulations, Abbigail Tumpey, a spokeswoman for the centers, said. “We haven’t been there on sepsis, and we’re going to continue to improve.”

NYU Langone, which sent Rory Staunton home in a hail of errors described in an About New York column and a federal report, has cut its sepsis mortality rate significantly, according to Lisa Greiner, a spokeswoman for the hospital.

Newsday: Chesley Sullenberger marks 5th anniversary of ‘Miracle on the Hudson’

The “Miracle on the Hudson pilot,’ Captain “Sully” Sullenberger, was in New York this week to promote a new $5,400 watch, the “208 seconds Aeroscope.” That’s how long it took Sullenberger to splash land the Airbus. A portion of sales of the timepiece will be donated to the American Red Cross and the Rory Staunton Foundation, which supports education and outreach efforts that aim to rapidly diagnose and treat sepsis, particularly in children.

Published: January 14, 2014
Newsday
Chesley Sullenberger marks 5th anniversary of ‘Miracle on the Hudson’

By Sheila Anne Feeney

Flight 1549

 

Capt. Chesley B. Sullenberger III has had an eventful life since saving 155 people by bringing US Airways Flight 1549 to a miraculous landing on the Hudson River after a flock of geese jammed the plane’s engines five years ago Wednesday.

Sullenberger, 62, has become a best-selling author, been congratulated by Presidents George W. Bush and Barack Obama, become an advocate for air safety and joined the Journal of Patient Safety “to bring a sense of urgency” to the need to reduce the estimated 200,000 deaths each year caused by medical errors. “That’s the equivalent of three airliners crashing per day,” he told amNewYork.

The “hero of the Hudson” has acknowledged that, after what he described in a 2009 Newsweek column as “the most harrowing three minutes of my life,” he suffered invasive thoughts and insomnia. However he returned to flying before retiring from US Airways in 2010.

Having dealt firsthand with an airplane crippled by a flock of birds, Sullenberger is disappointed that New York City is constructing a waste transfer station about 2,000 feet away from “one of the busiest runways in the nation” at LaGuardia Airport despite protests by safety experts. The plan is backed by Mayor Bill de Blasio and former Mayor Michael Bloomberg.

The city has argued that it plans to contain the garbage so as not to attract birds, but they aren’t the only problem, Sullenberger said. The location and structure of the station, he said, will not allow pilots to use precision instrument guidance that is helpful in low-visibility conditions. “The upshot is that not only is this not a good idea, but the runway [will be] less operationally useful,” said Sullenberger, whose Airbus A320-214 took off from LaGuardia headed for Charlotte, N.C.

Sullenberger, who lives in Danville, Calif., is in town this week to promote a new $5,400 watch, the “208 seconds Aeroscope.” That’s how long it took Sullenberger to splash land the Airbus. A portion of sales of the timepiece will be donated to the American Red Cross and the Rory Staunton Foundation, which supports education and outreach efforts that aim to rapidly diagnose and treat sepsis, particularly in children.

The retired pilot isn’t shy about his affinity for the Big Apple.

“Part of my heart will always be in New York because of the wonderful outcome and wonderful welcome I received,” he said.

Sullenberger doesn’t have a favorite airline, and is a member of “all” the frequent flier clubs. “My family and I buy tickets just like everyone else” in part because flights now are so full that retired airline workers aren’t always able to use flight benefits provided by former employers, he said.

Whereas announcements were once made on the planes when the flight crews discovered the world’s most famous living pilot was on board, now “they keep it quiet and respectful,” Sullenberger said. True, the pilots often emerge from the cockpit when he disembarks to pump his hand.

The number of commercial pilots who have managed to land after losing power is a “small fraternity,” Sullenberger acknowledged. Capt. Al Haynes, who crash-landed a DC-10 in Sioux City in 1989, reached out to console Sullenberger after his traumatic landing.

Sullenberger did the same with Qantas pilot Richard de Crispigny after his emergency landing at the Singapore Changi Airport in 2010.

YouTube Link to The Rory Staunton Story of Medical Tragedy

Rory Staunton Foundation. Sepsis Education, Awareness and Prevention.A YouTube link to The Rory Staunton Story of medical tragedy along with a really insightful piece on how the medical establishment contributes to hospital infections when they don’t wash their hands and patients die.

This was shown on WLNY-TV on Saturday, November 23, 2013.
https://www.youtube.com/watch?v=rHfmAKppj0U

 

IrishCentral: The Rory Staunton Foundation has been named as the recipient of the Hall of Fame Award at Mayo People of the Year Awards, 2013

Published: November 16, 2013
IrishCentral
The Rory Staunton Foundation has been named as the recipient of the Hall of Fame Award at Mayo People of the Year Awards, 2013

By JAMES O’SHEA

86image_pngThe Rory Staunton Foundation has been named as the recipient of the Hall of Fame Award at Mayo People of the Year Awards, 2013.

The Mayo People of the Year Awards event takes place on Friday, November 22nd in Castlebar, Ireland. The Hall of Fame Award has been given to The Rory Staunton Foundation because of the work the Staunton family has been engaged in since their son Rory’s death. The Rory Staunton Foundation has been to the forefront both nationally and internationally in creating awareness of sepsis, the deadly killer that kills more Americans than AIDS.

The organizers of the event cited the work being done by Ciaran, Orlaith and Kathleen Staunton including the introduction in New York State of Rory’s Regulations in January; these regulations are expected to save up to 8,000 lives in New York State annually. The organizers cited the Staunton family involvement in the first ever hearings in the United States Senate dealing with sepsis at which the Staunton’s testified  and the keynote address delivered by Ciaran Staunton at the  Sepsis Summit in Berlin.

Irish Prime Minister, Taoiseach Enda Kenny in welcoming the award said that “Rory had deep and true Irish roots from both his parents. “ He continued congratulating the Foundation who he said “has carried on extraordinary work in a short time to ensure that similar situations do not arise for other children.”

Taoiseach Kenny said that the Foundation was a worthy recipient of the Hall of Fame Award from the Mayo People of the Year Committee.

 

Channel TG-4 – Rory’s story focus of Irish TV documentary

A documentary entitled “Dli Rory Dochas O Neamh”, which is Gaelic for “Rory’s Law, Hope from Heaven”. The documentary is about Rory Staunton, a twelve year old boy from Queens, New York, who died from misdiagnosed sepsis. The  program originally aired on TG4 in Ireland on September 29, 2013 at 9:30pm.

RoryFlyer01

Rory Staunton Foundation gains momentum with support of Senator Tom Harkin

78senatelogo_copyNew York, N.Y. – September 16, 2013 –  The Rory Staunton Foundation (www.rorystaunton.com), today announced that  Senator Tom Harkin (D-IA), Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee, is providing his full support to the Foundation’s mission to stop sepsis through education and awareness by holding Senate hearings on September 24th, 2013 at 10am.

“Sepsis kills more Americans than AIDS,” stated Ciaran Staunton, Rory’s father.  “We gained a stronghold in the State of New York with Governor Cuomo mandating the Rory Regulations providing medical institutions with mandated criteria regarding early sepsis diagnosis, treatment and communication.   The systemic failure that caused the totally preventable death of my twelve year old son must be immediately corrected across the country.   I will speak for Rory and every child on September 24th at the U.S. Senate Hearings.  This is my life’s mission.”

Senator Harkin, on World Sepsis Day, said, “No one should leave a hospital sicker than when they came in. We know that many healthcare-associated infections are preventable and easily treatable, given that our medical professionals have the right education and training about symptoms and warning signs. Hundreds of thousands of Americans contract sepsis infections each year—so we must take bold steps to prevent these needless illnesses and death.”

The Rory Staunton Foundation seeks to reduce the number of deaths from sepsis through education and outreach aimed at faster diagnosis and effective treatment of sepsis, particularly in children.

Ireland Marks World Sepsis Day at Our Lady of Lourdes Hospital Drogheda


Our Lady of Lourdes Hospital, Drogheda, Co Louth, Ireland

RoryandKathleenandFergusIrish Minister Fergus O’Dowd has praised Our Lady of Lourdes Hospital, Drogheda, for leading the way in Ireland in highlighting awareness of sepsis in both general and maternity care. Speaking on World Sepsis Day (September 13), Minister O’Dowd praised the hospital for their work in combatting the potentially fatal whole-body inflammation that has tragically struck the Minister’s own family. “I want to congratulate Our Lady of Lourdes Hospital for their work in highlighting a condition that is often diagnosed too late,” said Minister O’Dowd. “This is the only Irish hospital to be a registered participant on the World Sepsis Day Coalition website, and hosted a series of sepsis awareness events on World Sepsis Day. “The event at Our Lady of Lourdes Hospital incorporated presentations, video and information displays and a sepsis knowledge quiz among staff.

“Last year we lost our beloved nephew Rory Staunton because the numerous physical warnings of an aggressive sepsis infection were missed by healthcare staff in the US until it was too late to save his life. The story of Rory’s remarkable young life and terrible death has led to a series of bipartisan legislative and regulatory mandates in New York and elsewhere, requiring health care providers to develop and implement protocols to rapidly diagnose and treat sepsis infections. These mandates, known as Rory’s Regulations, has seen New York State lead the US in battling the number one killer in hospitals and make major improvements in pediatric care. I hope that through the Rory Staunton Foundation, and initiatives such as we have seen in Our Lady of Lourdes Hospital, that we can lead the way in Ireland in educating parents and medical staff to the signs of this preventable disease.”

“I hope that these are the first steps on getting Ireland onto a surer footing when it comes to battling this terrible condition.”- Minister O’ Dowd said.

Irish America Magazine: “Rory’s Regulations” Will Fight Sepsis in New York Hospitals

Published:  August / September 2013
Irish America Magazine
“Rory’s Regulations” Will Fight Sepsis in New York Hospitals

by Kelly Fincham, Contributor

Orlaith, Rory, Kathleen and Ciaran Staunton. Photo: Sean McPhail

Orlaith, Rory, Kathleen and Ciaran Staunton. Photo: Sean McPhail

New York has become the first state in the U.S. to mandate a series of protocols to diagnose and treat sepsis before it turns fatal.

The protocols have been named “Rory’s Regulations” for 12-year-old Irish American Rory Staunton who died from an undiagnosed case of sepsis on April 1, 2012. Doctors failed to recognize that Rory was suffering from sepsis until it was too late.

Sepsis is a common but almost unknown killer. It is the single leading cause of death in intensive care units in the U.S. and kills over 200,000 Americans each year; more than lung cancer, stroke and breast cancer combined. However, public awareness of the dangers of sepsis is so low that a 2010 report found 70 percent of Americans did not even know it existed.

Sepsis is a dangerous condition caused by the body’s own immune response to infection. The body produces chemicals to fight the infection, but those same chemicals cause widespread inflammation, which can shut down the body’s organs.

“Rory’s Regulations” will require all New York hospitals to be proactive about sepsis and aim for early identification and treatment of the infection. The Regulations also call for increased patient communication and a “more meaningful” role for parents when their children are in the hospital.

Rory’s parents Orlaith and Ciaran and his sister Kathleen have worked tirelessly since Rory’s death to try and prevent more families from suffering from their devastating loss.

Their advocacy is a poignant tribute to Rory, who was a keen student of politics and social justice despite his young age.

The family has also launched the Rory Staunton Foundation (www.rorystaunton. com) which joined forces with the Global Sepsis Alliance in April in an initiative which aims to reduce sepsis deaths by 20 percent by 2020.

And they have had several meetings with the Senate Health Committee staff of Senator Tom Harkin with a view to holding the first ever national hearings on sepsis, which is now killing more Americans than AIDS.

Rory’s father Ciaran says the family will keep working to prevent any more deaths from sepsis. “If this had happened to Kathleen, Orlaith or me, Rory would be doing the same thing,” Ciaran says. “He was a true champion of the underdog and he never took no for an answer.”

Ciaran will deliver the keynote lecture about Rory’s Regulations at the first Sepsis Summit Berlin, which will take place in the German city on Monday, Sept. 9. The conference has been organized by the World Sepsis Alliance in advance of World Sepsis Day on Sept. 13.

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

IrishCentral: First Rory Staunton Memorial Award Presented in Ireland

Published:  May 21, 2013
IrishCentral
First Rory Staunton Memorial Award Presented in Ireland

Kathleen Staunton, Rory Staunton and Alana O’Dowd at the end of January, 2012, at the United Irish Counties dinner in Queens Photo by: Margaret Purcell

Kathleen Staunton, Rory Staunton and Alana O’Dowd at the end of January, 2012, at the United Irish Counties dinner in Queens Photo by: Margaret Purcell

Friday last saw the launch of the first annual ‘Ablevision Ireland International Film Festival’ and ‘The Rory Staunton Memorial Award’ in Drogheda. Over 20 films were entered into a competition on the theme of disability and integration. 6 of these were short listed and these came from the UK, Boston and Ireland. The winning entry was from S.O.S Kilkenny for the film ‘Earn It.’

As the name suggests, ‘Earn It’ is about earning respect for those with disabilities. The central character is faced with conflicting emotions on both the right and wrong route to gaining respect and indeed although the wrong route is much easier he opts for the right one in the end. It reflects the life of Rory Staunton who always had a keen sense of social justice.

Rory passed away at age 12 in April 2012 after being misdiagnosed at NYU Langone hospital in Manhattan. He had led the fight in his school to end use of the word “retard.”

The launch of the Rory Staunton Memorial Award started off the evening at 6 o’clock in the Drogheda Arts Centre. MC for the night was Orlaith Carmody, former RTE journalist and a prominent media spokesperson. Prior to this was a short reception in which the excitement of the atmosphere was strongly felt as the crowds arrived. The event was sponsored by Aer Lingus.

Orlaith introduced and gave an overview of the six finalist films before showing them. After seeing these films which touched on themes of respect and integration there was a difference in the atmosphere felt within the room, which for me as an onlooker, was one of solidarity, no longer was it ability and disability, us and them. We were all together sharing common problems.

Alisa Carbonne an ‘Ablevision’ Boston representative travelled over to Ireland for the launch and spoke about the common themes that cross national boundaries.

Ablevision Ireland’s film ‘Joe and Sarah’ was premiered for the first time to the anticipatiation and delight of all those involved. The film was centred on a love story between two adults with Down syndrome who decide to run away together when their parents disagree with them dating and indeed had a happy ending with the buying of their own apartment, much to the distress of the girl’s father! The film was written by the Ablevision crew and directed by Frank Kelly and completed within a timeframe of six weeks.

The various different groups were sitting at the edge of their seats awaiting results of the ‘Rory Staunton Memorial Award’ competition by the time Rory’s uncle ‘Minister of State’ Fergus O’Dowd took to the stand to announce the results. Fergus read from a letter from Judy A. Dorn Regional Director of Special Olympics New York in which she wrote about Rory.   ‘Embodied is his very being was an innate moral compass that compelled him to champion the rights of those less privileged financially, physically, mentally and emotionally.’ This was certainly true of Rory’s character as he took on the Special Olympics New York campaign entitled “Spread the Word to End the Word” to his school and community at just 9 ½ years of age.

The award presented to the delighted winning group was centred on an old Irish folklore tale ‘The Children of Lir’ originating in Co. Mayo, the home of Rory’s father Ciaran Staunton and a place where he felt strongly about revisiting his cousins every summer when he returned home to Ireland.

On the top of the statue is a swan which is indicative of Rory’s interest in flying and his dream of becoming a pilot. One of Rory’s first cousins Ronan Staunton from Mayo who was there on the night mentioned seeing Rory’s picture on the widescreen during the memorial award ceremony as being a somewhat surreal moment in which he had to pinch himself just to remind himself that Rory was no longer there in the room.

The values of what he stood for certainly were present within the room though and leaving the building there was strong sense of togetherness. A number of visitors on the night noted that the Film Festival highlighted issues of intellectual disability that they were unaware of. Rory, we know, was already aware of this world.

A series of workshops on film making by Frank Kelly, a Drogheda born script writer, also ran throughout the day for students involved in media modules to showcase their work.

Dr. Oz Show Link – Could your child be at risk?: Rory’s Story

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