A U.S. Senate committee heard powerful testimony on the crisis of sepsis in America from the family of Rory Staunton, the 12-year-old Irish American boy from Queens who died in 2012 when the killer infection tore through his body after doctors failed to correctly diagnose the illness.
The appearance of Rory’s Irish-born parents, Ciaran and Orlaith, before the Senate Committee on Health, Education, Labor and Pensions on Tuesday morning marked the first time the chamber ever heard testimony about sepsis, which each year takes the lives of more Americans than AIDS and is the largest killer of children in the world.
A busload of family and friends, including Rory's sister Kathleen and Orlaith's brother, Irish minister of state for the environment Fergus O'Dowd, made the trip to Washington for the hearings chaired by Senator Tom Harkin.
The Democrat from Iowa opened the hearing by saying that Rory’s death should never have happened.
“One of our witnesses, Ciaran Staunton, will tell a tragic story about his son that illustrates how the failure to detect can be a fatal problem. I’ll let Mr. Staunton tell his story, but let me just say that his son died of an infection that was detectable and survivable,” said Harkin.
Since Rory’s tragic death his parents have dedicated their lives to increasing awareness of sepsis -- a treatable illness if diagnosed in time -- and developing new state and federal protocols that would mandate thorough sepsis education for medical professionals who too often fail to recognize the warning signs.
“Following his death we read the statistic that 70 percent of Americans had never heard of sepsis, and we also discovered that sepsis is one of the largest killers not only in the United States but in the world,” Ciaran Staunton, a native of Co. Mayo and a co-founder of the Irish Lobby for Immigration Reform, told the committee.
“Sepsis has not received the attention it deserves from governments throughout the world or indeed up until today in these United States. The Staunton family, through the Rory Staunton Foundation, is determined to change this situation.”
The Senate appearance by the Stauntons capped an emotional few days for the family that included the Monday morning dedication of a new park in Jackson Heights, Queens in Rory’s name.
The Rory Staunton Field will sit across from the Garden School, which Rory attended until his death. It is believed that a cut he sustained while playing basketball in the school gym that went untreated allowed the fatal infection to enter his body.
The Rory Staunton Field will be part of an expansion of the existing Travers Park on 78th Street just off Northern Boulevard. His parents and local community successfully lobbied an array of New York City politicians to purchase the parcel of land and convert it to public green space in their son’s name -- $4 million came in funding from City Council member Daniel Dromm; $1 million from Queens Borough President Helen Marshall; and $1 million from the New York City Mayor’s Fund.
Several local politicians and a representative from Mayor Michael Bloomberg’s office attended the naming ceremony. Congressman Joe Crowley praised Rory as an “exceptional young man” who was destined for a bright political career until his life was cut short.
“I remember when I first met Rory, he told me he wanted to be president of the United States,” said Dromm, a close friend of the Stauntons for several years.
“I thought to myself, I really don’t want to have a primary against him when he grows up!”
The Stauntons traveled to Washington, D.C. after the ceremony in anticipation of Tuesday’s Senate appearance, which came at a hearing about U.S. efforts to reduce healthcare related infections.
Ciaran Staunton re-told the harrowing story of his only son’s death from undiagnosed sepsis after a series of stunning medical errors from Rory’s pediatrician and emergency room staff at NYU Langone Medical Center, where he passed on April 1 of last year when the sepsis diagnosis came too late.
On the Wednesday prior to his death Rory came home with the basketball cut and was sick to his stomach early the next morning. Complaining of severe leg pain, he eventually fell asleep with his mother Orlaith by his side, and awoke hours later with fever and more pain.
A fever of 104 that burned regardless of over the counter medicine continued throughout Thursday. Rory’s pediatrician Dr. Susan Levitsky eventually sent him to the ER at NYU Langone that evening with a diagnosis of gastric flu, though his skin was discoloring and the pain in his leg was worsening – telltale signs of a possible sepsis infection.
“At the emergency room they concurred with the diagnosis of gastric flu, ignoring any other symptoms present,” Staunton testified. “Twelve minutes before Rory left the hospital his vital signs were taken. His condition had deteriorated. It appears that no one took the time to review all available information.
“They discharged him noting ‘patient improved,’ despite that fact that his vital signs were totally irregular and had deteriorated since his arrival there. The hospital staff concluded he had a sick stomach and was suffering from dehydration.”
Rory’s parents brought him home to Sunnyside, Queens, and his condition continued to deteriorate. The next day, Friday, the pediatrician told the Stauntons not to worry about the fever and his other ailments which by this point also included severe dizziness.
However, his health rapidly deteriorating, Rory's petrified parents raced him back to NYU Langone that evening where ER frantically went to work to treat him – “all hell broke loose,” as Staunton told the Senate.
But by then it was too late, as the 12-year-old was in the throes of sepsis that was racing through his organs. Less than 48 hours later, Rory Staunton died in the ICU, leaving behind his heartbroken parents, a 10-year-old sister, Kathleen, and shocked family members and friends throughout Ireland and the U.S.
Rory’s parents had no idea what sepsis was, and therefore never thought to look for possible symptoms. The fact that blood tests showing clear signs of the infection went ignored by his pediatrician and staff at NYU Langone galls the family even more because sepsis is treatable if it is caught at its onset.
“Rory’s mom stripped him down and checked to see if they had missed a bug bite. She also checked him for signs of meningitis,” Staunton testified. “But we never heard of sepsis.”
Now, the Stauntons are committed to carrying forth Rory’s memory by helping to ensure that no family ever feels the pain of losing a loved one to undiagnosed sepsis. In May of this year New York Governor Andrew Cuomo signed into law “Rory’s Regulations” which require all hospitals in New York State to adopt protocols to identify and treat sepsis.
“Rory’s Regulations will help New York set a gold-standard for patient care. Governor Cuomo believes that 5,000 to 8,000 lives a year in the State of New York will be saved as a result of Rory’s Regulations,” Staunton told Senate members.
“If this strategy was applied to all Americans, it could save more than 150,000 lives a year, more than 400 people a day.
“Sepsis is a medical emergency. Sepsis needs to be suspected. Once it is suspected and treated we can save lives and save the U.S. economy billions.
“We are calling on Congress to institute a federal nationwide program of education on early detection of sepsis with similar standards in all 50 states. We are also calling on Congress to create a comprehensive educational resource so that doctors, nurses and, yes, parents and patients can include sepsis as a possible diagnosis when a patient shows up in an emergency room with similar symptoms to Rory. Sepsis is not a deadly disease when caught in time.”
To read Ciaran Staunton’s full testimony to the Senate click here.
Here’s the video of the full Senate hearing on “U.S. Efforts to Reduce Healthcare-Associated Infections”