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September 19, 2017 01:04 PM

 

The tragic death of a 12-year-old boy has led a grieving family to educate others on the issue of sepsis — one of the leading causes of death in the U.S.

There was nothing unordinary about the cut middle schooler Rory Staunton got on his arm that Wednesday in March 2012. Rory was in gym class in Jackson Heights, New York, when he dove for a ball and fell.

Though the nurse was on duty in her office, Rory’s gym teacher at the Garden School looked at his cut and applied two Band-Aids to cover it up — not stopping to clean the wound first or send the boy for first aid.

By Thursday, Rory was in his pediatrician’s office, vomiting with a 104-degree fever and complaining of pain in his leg. The emergency room at NYU Langone Medical Center came next, where he was given fluids to treat what doctors thought was merely dehydration and an upset stomach. He was sent home with a prescription for an anti-nausea drug and told to take Tylenol to control his fever.

Rory Staunton
The Staunton Family

His fever wouldn’t go down, though. So after a follow-up call to his pediatrician, Rory was brought back to the emergency room Friday night. This time he was admitted to the Intensive Care Unit, his doctors telling Rory’s parents Orlaith and Ciaran Staunton that their son was gravely ill and fighting for his life.

Rory’s body was in septic shock brought on by an avalanche of responses his immune system was bringing to bacteria that had gotten into his blood through the cut in his arm.

By Sunday he would lose that fight, dying in the ICU.

Rory Staunton
The Staunton Family

Sepsis is a frightening condition. The leading cause of death in hospitals, it affects 30 million people globally a year — killing 6 million babies and children. In the United States, at least 250,000 Americans die a year from sepsis. That’s more than breast cancer, AIDS and strokes combined.

Most harrowing: it’s completely preventable, treatable and curable — though most Americans, including Orlaith and Ciaran at the time of Rory’s diagnosis, are completely unaware of it.

“It’s just astounding,” Orlaith tells PEOPLE. “When Rory died, I thought, ‘This has to be something really rare.’ Our son was 160 lbs. He was nearly 6 ft. tall. I did not think there was anything that could kill him within four days that I wouldn’t know about. And there was. And it’s the biggest killer of children in the world.”

Doctors, it turns out, have a difficult time diagnosing sepsis. It’s symptoms at first can look like less serious ailments: confusion or disorientation; shortness of breath; high heart rate; fever, or shivering, or feeling very cold; extreme pain or discomfort; and clammy or sweaty skin.

In the case of Rory, his parents had flagged his cut on his arm to his pediatrician and doctors, but they never made the connection.

The Stauntons know what to look for now. And five years after Rory’s death, they have turned their son’s heartbreaking story into a powerful movement for sepsis education — paying for everything out of their own pockets.

The Staunton family
The Staunton Family

They formed The Rory Staunton Foundation to ensure that no other child or young adult dies of sepsis resulting from the lack of a speedy diagnosis and immediate medical treatment.

Through their foundation, they petitioned the state of New York — who in 2013, became the first state in the nation to establish a statewide mandate requiring all hospitals to adopt sepsis protocols known as “Rory’s Regulations.” The protocols (among other things) develop a process for screening and treatment. As of May, more than 5,000 New York lives have been saved by Rory’s Regulations.

Illinois adopted the mandatory protocols in 2016. Other states have pledged to follow.

For the Stauntons, staying quiet about sepsis after Rory’s death was never an option.

“Rory wouldn’t sit around — he we wasn’t a passive kid, he was very involved in causes and very involved with a lot of social issues,” Orlaith explained. “He would have wanted us to do something about this.”

Ciaran agreed. “You talk about statistics. We are a part of those statistics and we always will be. We lost 25 percent of our family. But between 1 and 2 million people died since Rory died. Our point was we had never heard about sepsis before he died. And yes, many people would have curled up — and we their have been mornings we felt like curling up. But we were angry.”

“Sepsis was killing nearly 3.5 million people when Rory died, and the government agencies weren’t doing anything about it,” he continued. “We organized the first series on the United States Senate on sepsis and when we met the members of the Senate, they didn’t have a clue what we were talking about. Can you imagine them saying, ‘Well, we never heard of that?’ It was almost like, ‘Are you sure?’ “

Rory Staunton
The Staunton Family

“We’re not looking for a cure for it,” Orlaith added. “The cure is antibiotics and fluid. But the cure is also identification. And we need to give that knowledge and that power to parents, to children, and we need them to be able to be their own advocates. We’re not waiting for this amazing cure — we know the cure.”

This year, the Stauntons published a children’s book called Ouch! I Got a Cut that teaches readers about the basic approach to caring for cuts and scrapes. The book has been added to the New York State educational curriculum and its 1.9 million teachers.

“We’re very excited about it,” Orlaith said of the book. “We really felt there was a real need to return to the basics of first aid. And we thought of an idea of having a campaign that would be the three C’s: Cut, Clean and Cover. If you get a cut, you clean it and then cover it. It’s a simple message but a really crucial one of children being aware of their bodies and what can happen to them.”

The Staunton Family

“The book will make a difference and it’s really great that little kids are going to learn in a non-scary way how to treat their wounds,” she continued. “We all know that our children didn’t need to die and we don’t want other parents to go through what we went through. It’s a life sentence and we want to make sure other families don’t have to go through it.”

According to sepsis.org, every cut, scrape, or break in the skin can allow bacteria enter your body that could cause an infection. For this reason, it’s essential that all wounds be cleaned as quickly as possible and be kept clean.

  • Always wash your hands before touching an open wound. If possible, wear clean disposable gloves.
  • If possible, wear clean disposable gloves. If the wound is deep, gaping, or has jagged edges and can’t be closed easily, it may need stitches. See your healthcare provider as soon as possible.
  • If the wound does not appear to need stitches, rinse it and the surrounding area with clean (not soapy) water. Gently running water over the wound can help remove any dirt or debris that may be inside. If you believe that there is still debris in the wound, this should be checked by a healthcare provider.
  • If desired, apply an antibiotic cream or ointment.
  • Cover the wound to protect it from dirt if necessary.
  • Watch for signs of infection: redness around the wound, skin around the wound warm to touch, increased pain, and/or discharge from the wound. Consult your physician or nurse practitioner if you suspect you may have an infection.

In the process of it all, the Stauntons also united families around the county who have experienced similar losses, forming a volunteer network of sepsis survivor and families known as the National Family Council on Sepsis. With members in more than 36, states, the council provides everything from support to grieving families to resources to help improve sepsis policies and public awareness of the condition in their local neighborhood.

An annual national forum was established too (held in September for Sepsis Awareness Month).

Kathleen and Rory Staunton
Kathleen Staunton
The Staunton Family

Rory died on April 01, 2012. And despite all the work they’ve done, the people they’ve met, the lives they’ve changed, and the time that’s passed, the Stauntons — who also have a 16-year-old daughter named Kathleen — said they’re still haunted by the loss.

“Every morning we wake up to the same nightmare that was there five years ago,” Orlaith says. “There’s a reward for our work in knowing that we’re helping people and working to make a difference in the world, which is what Rory wanted to do and what our daughter wants to do. But there’s no comfort in our grief. He’s not here. The nicest thing of all would be able to go home and tell him, ‘He listen, guess what I did today.’ And he’s not there.”

“Our son is dead. That’s the headline,” Ciaran says through tears. “We mark every calendar with what’s changed. Our big boy should have started university this week. He should have graduated high school. All of these things he should have done. He should, he should have, he should have. Where would he be now? These questions will be with us until we die. This is a reoccurring pain — it’s every minute of every hour of every day. And we have to stay with that. But others shouldn’t have to.”

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