Death by Strep: One Family’s Tragic Loss – Everyday Health
By Allison Takeda, Senior Editor
Published: Sunday, June 04, 2012
Rory Staunton started flying planes when he was still in single digits. He’d sit for hours in front of a flight simulator on his computer, learning the routes from New York to London, or London to Tokyo, or Tokyo to San Francisco. He knew every country in the world by their airports, and he planned to visit all of them.
When his parents told him he had to be at least 16 to take flying lessons, 11-year-old Rory got on the computer and did a little research while his parents were out to dinner.
“I’ve got it!” he said when they returned home. “I found a school in Long Island where you can get flying lessons when you’re 12.”
Rory tended not to give up. On May 13, 2011 — his 12th birthday — he hopped into a two-seater next to his instructor and took off into the sky above Long Island, as his parents, Ciaran and Orlaith, and his little sister, Kathleen, watched from the ground, their hearts in their throats and their hands clasped tightly together.
Less than a year later, Rory was gone, killed by what’s believed to be complications from a common strep infection. Now his family is living its worst nightmare and wondering what could have been done to save their son.
A Simple Scrape Turns Serious
When Rory fell and cut his elbow on Tuesday, March 27, while playing basketball at the Garden School in Queens, N.Y., it wasn’t particularly gruesome. So scant was the blood, he got a bandage and went on his way, his father says.
The next day, Wednesday, the cut reopened. This time, Rory was given two bandages. He seemed fine otherwise, so no further treatment was administered, his parents say. It was just a simple scrape.
But later that night, around 1 a.m., Rory woke up complaining of a strong pain in his leg. He said he needed to vomit. Orlaith massaged the area until her son fell back to sleep, but Rory woke up before morning, achy and feverish. On Thursday, his leg pain was worse. And his temperature was 104.
His parents say they called his pediatrician and left a message. Hours passed, and Rory’s fever continued to rise. They called twice more. An appointment was scheduled for that evening.
By the 6 p.m. appointment, Rory was almost too weak to walk. He had chills, and blue marks were strewn across his body. He threw up as soon as he arrived at the pediatrician’s office, and again while she was examining him. Ciaran Staunton described Rory’s leg pain and mentioned the cut on his elbow. She noticed his throat was red, so she took a swab to test for strep throat.
The results came back negative.
It was probably a stomach bug, his father says she told him. It was going around. To be safe, she recommended he go to the emergency room, where they could put him on IV fluids and give him something to prevent the vomiting.
The Stauntons drove Rory to New York University Medical Center in lower Manhattan. They were extremely worried.
‘A Young, Strapping Guy’
Ciaran Staunton is a hearty man, with a lilting Irish brogue and an easy warmth. He came to the United States from County Mayo more than 30 years ago and has lived the past decade in New York City, where he is a prominent local businessman, the president of the Irish Lobby for Immigration Reform, and, above all else, a husband and father.
“When Rory was 3 days old,” Staunton says, “I brought him here. This is where we sat. In this corner.”
Staunton nods to a booth in the upstairs restaurant of his bar, O’Neill’s, an Irish pub tucked away between drab gray office buildings in the heart of midtown Manhattan. The place is empty, save for a few bartenders and busboys, and for a moment, he is alone with his son in the memory of that May morning just over a decade ago. He shows how he cradled the baby against his chest, rocking his arms side to side, and his face softens to a warm smile.
“Rory wanted to be a pilot, but he also wanted to make change in the world,” Staunton says. When he was born, his uncle Niall O’Dowd heralded his arrival in the ethnic newspaper the Irish Voice with the headline “Rory Staunton: Will Announce in 2044 for President.”
Rory was a natural leader, with a strong social conscience and a passion for politics that no doubt came from his father. He and his dad were best friends, and Rory often stayed up late during election season to watch the primaries with his dad. Recently, he had helped start a debate team at school. Thanks to his father, Rory had met President Bill Clinton and his wife, Secretary of State Hillary Clinton. He’d shaken hands with President Barack Obama and First Lady Michelle Obama. He counted Rosa Parks and Martin Luther King among his heroes. Before he was old enough to vote, he knew more about the world and the people who ran it than many adults know. But in other ways, he was very much a typical 12-year-old.
“Rory was always hanging out here,” Staunton says, referring to O’Neill’s. “He used to swim around the corner at the YMCA, and afterward, he’d come in with his cousin and his sister, and they’d have their fries and their scrambled eggs and then run around downstairs.”
He pulls his son’s school picture from his wallet, one of many photographs he keeps on him and in the bar’s office in the basement. It’s a recent shot, and a nice one: Rory, smiling, his shaggy red hair combed neatly out of his eyes, his broad shoulders turned squarely at the camera.
“He’s a good-looking kid, right? Five-nine, 150 pounds. A young, strapping guy.”
A Case of Strep Goes Horribly Wrong
Just months after the school photo, Rory was nearly unrecognizable when he arrived at the emergency room of New York University Medical Center. He grimaced in pain, and his tall, sturdy frame suddenly seemed smaller and more childlike. His father says that a nurse took him to an observation area, where he was hooked up to IV fluids and examined by two doctors. Both echoed what his pediatrician had said, Staunton recalls. It was probably a stomach bug. There was one going around. Staunton says he wasn’t convinced, but he filled the prescription for Zofran, a stomach medication, and took Rory home.
The next day, Friday, Rory’s condition worsened. He could tolerate only half-spoonfuls of fluid at a time, and he needed help sitting up in bed. He had diarrhea, a fever, and more mysterious blue marks.
By 9 that night, the bruise-like blue marks strafed his body, and Rory’s skin had turned a sickly yellow color. Now the blue marks were accompanied by several bright red spots on his skin. He was desperately weak. Staunton called the pediatrician – his sixth call in two days, he says. This time, she told him to take Rory immediately back to the emergency room. There, doctors swiftly ushered Rory to a bed and an oxygen mask.
“Rory, what day is it?” one of them asked.
“I don’t know, but I know it’s March.”
Staunton has memorized this conversation, and every other conversation from those few days after Rory got sick. He recounts them all almost mechanically, the details pouring forth in one long uninterrupted stream, his voice quiet but steady, his eyes cloudy but unblinking.
“Ask him who the president is,” Orlaith said.
“Rory, who’s the president?”
“Who will be the president for the next four years?”
Here, Staunton pauses, choking up and unable to continue talking about one of his final conversations with his son. He takes a deep, shaky breath, and then, in a choked whisper, finishes his thought. He begins to weep.
Rory was gravely ill, the ER doctors told Ciaran and Orlaith. Critical, they said. The cut on his elbow had been infected with strep – the same strep for which his pediatrician had swabbed his throat – and it was now attacking his system. His kidneys were failing. He needed oxygen. His arm had turned black as the tissue died from necrosis. They had resuscitated him twice. They were fighting it – Rory was fighting it – but he was sick, and he wasn’t going to get better.
Grief-stricken, the Stauntons sat with their son all weekend, telling him stories they hoped he would hear and know how much he was loved. When he died Sunday, April 1, four days after falling ill, they got into bed with him and held him, the trickle of sweat down the back of his neck still warm.
The cause of death the family got from the hospital-an official autopsy report from the medical examiner is not yet available-was streptococcal toxic shock caused by streptococcus pyogenes, or group A strep infection. Group A streptococci are the bacteria most commonly responsible for strep throat, which affects an estimated 7.3 million people in the United States every year – including, the Stauntons say, several students at Rory’s school in the weeks leading up to his hospitalization.
For most of these millions, the symptoms of strep are relatively mild: sore throat, fever, swollen tonsils. In some cases, patients experience impetigo or sinus problems, but even then, a quick round of antibiotics is usually enough to kill the infection.
“Fortunately, strep continues to be susceptible to antibiotics, including good old penicillin. It remains very, very treatable under most circumstances,” says Camille Sabella, MD, a pediatric infectious disease specialist at the Cleveland Clinic. “A lot of times when people don’t get well from strep, it’s not because we don’t have the drugs to treat it; it’s because the effects of the bacteria are so aggressive.”
With these infections, the bacteria typically invade the body in other ways, opening the door for serious complications such as necrotizing fasciitis (flesh-eating disease), bacteremia (blood poisoning), or, as in Rory’s case, toxic shock.
“There are some strains [of group A strep] that can be very aggressive and produce toxins that break down the skin and the soft tissues,” Dr. Sabella explains. “When that happens, the bacteria can break though the very superficial parts of the skin and really get into the deeper layers and, ultimately, the bloodstream, where they can cause a lot of damage.”
These cases, known as invasive strep infections, affect between 10,000 and 12,000 Americans a year, according to figures from the U.S. Centers for Disease Control and Prevention’s Active Bacterial Core surveillance. Those most at risk, Dr. Sabella says, are the very young, the elderly, and patients who have immunocompromised states and skin conditions (such as eczema and chicken pox), although invasive strep can also follow seemingly mild lacerations – like the simple scrape Rory got at school.
The Deadly Side of Strep Infections
The bacteria for strep are widespread, so it’s difficult to determine where or with whom the deadly infection originated. Staunton says he believes strep was going around his son’s school. The school could not be reached for comment.
“Group A strep is one of these bacteria that are so common in the environment that it’s hard to really pinpoint where you’re getting it from,” says Richard Malley, MD, an infectious disease specialist at Children’s Hospital Boston. “Just being around somebody who has streptococcus in their throat exposes you to getting it as well. There are even examples, in the military, of streptococci being able to survive on inanimate objects, like blankets.”
That type of transmission, however, is exceedingly rare, Dr. Sabella notes. “Group A strep is generally spread from person to person,” he explains. “Picking it up from objects or pets or carpets is not usually possible. The main modes of transmission are through droplet spread, contact with respiratory secretion, or direct contact with [infected] skin.”
Strep that gets into the skin is generally riskier – in part because it can more easily spread to other parts of the body, such as the bones, the joints, or the blood – but not all skin cases are severe, and not all throat cases are benign.
“Are there specific factors that make one group A strep more virulent than another? We don’t know exactly,” Dr. Malley explains. “If you look at all of the group A strep, even though those bacteria have the same name, on a genetic level, they’re very, very different. It’s a bit like the human race: We’re all people, but we have enormous differences in our DNA, and those differences result in differences in our height, our skin color, our eye color, etc.”
Among the various strains of group A strep, he continues, certain bacteria may produce more of a specific type of toxin or poison, which might translate into more or less virulence, or a more or less aggressive nature.
“The other side of the coin,” he says, “is the host. You might be very resistant to group A strep, for example, but I might fall apart. And the difference might just be your genes compared to mine, or your past exposure compared to mine. … It’s very hard to say that one person is protected and another person is not. It’s a complicated issue.”
Strep deaths are uncommon. Millions of people are infected every year, but only a small percentage of those cases are invasive, and only a small percentage of those cases – 10 percent to 14 percent, or approximately 1,200 to 1,600 of the CDC’s estimated 12,000 – result in death. Streptococcal toxic shock, which is what is believed to have killed Rory, is even more unusual, especially among children. There are less than 600 cases a year in the country.
Those numbers, of course, mean nothing to Staunton. But these do. “Strep has cost me 25 percent of my family,” he says. “Fifty percent of my children. That’s the reality I’mliving with.
“It is a horrible form of torture that has been inflicted on us, on Rory,” he adds. “One Tuesday, I’m picking out what kind of toppings he wants on his pizza, and the next Tuesday, I’m speaking at his funeral. Someone needs to send a message: There’s a killer on the loose.”
‘Well One Day, Sick the Next’
The Stauntons are not alone. Less than 20 miles from their Queens home, a Rockville Centre, Long Island, family is coping with the same reality. Sean Sweetman, 2, died in February under circumstances remarkably parallel to Rory’s. He, too, was reportedly diagnosed with a stomach virus that turned out to be invasive group A strep. He, too, was taken from his family just days after getting sick.
Similar stories from around the country – an 8-year-old girl in Ohio, a preschooler in Virginia, a toddler in Oregon – are part of the reason why Staunton is speaking out.
“There’s nothing out there for me. Rory isn’t coming back,” he says. “But if our story helps save someone else’s son, maybe some good can come of this. Maybe we’ll be the last people to be tortured by the loss of a child to strep.”
Awareness will help, but experts say some deaths can’t be prevented, in part because there’s often no cardinal sign that indicates strep over another infection.
“Unfortunately, bacteria, when they hurt the host, tend to hurt the host in much the same way as other bacteria: with fever and pain,” Children’s Hospital’s Dr. Malley says. The more distinct red flags occur later, when the illness has already progressed.
With streptococcal toxic shock, for example, the first symptoms may be fever, chills, muscle aches, nausea, and vomiting, all of which could be indicative of other conditions, such as the flu. As the bacteria spread throughout the body, however – usually within 24 to 48 hours of exposure – patients may experience rapid deterioration presenting as low blood pressure, accelerated heart rate, bright red skin, excessive bruising, yellowed eyes, tissue necrosis, and pain or swelling at the site of infection.
“It’s very acute, meaning the person is well one day and sick the next,” Dr. Malley explains. Because of this, invasive strep cases can be difficult – but not impossible – to treat.
“Toxic shock, especially with strep, can be very, very aggressive,” Dr. Sabella warns. “Fortunately, we do have antibiotics that are active against the strep itself. But a lot of times, it’s the toxins from the strep that cause the damage. We usually have to do significant debridement or drainage of the soft tissue; that’s surgical treatment to clean out the tissues and to allow the antibiotics to get where they need to go to treat the bacteria.”
In Rory’s case, surgery wasn’t an option. “It was gone too far,” Staunton recalls. “No matter what they were throwing at it, it killed everything.” He wipes away a tear, that is immediately replaced by another one. “He was my best friend.”
A Family’s Last Goodbye
“He used to steal my clothes, you know,” Staunton says. “Only the good ones. I got this beautiful shirt from my wife for Christmas, and he came down one morning dressed for a debate, and there it was. I said, ‘That’s my shirt!’ He said, ‘Not anymore.’”
Rory was buried in that shirt. “The last thing I had to do was get his shoes cleaned, get my shirt cleaned, and iron his pants to bring to the funeral,” his father says,weeping again. “I must have ironed his pants 40 times that morning.”
The funeral, attended by more than 1,000 people in New York, was also streamed live to friends and family around the world. Shortly after, Rory boarded his final flight: a one-way trip to Ireland, where officials stamped his passport for the last time. There, in the shadow of St. Peter’s Church in Drogheda, 30 miles from Dublin, loved ones lowered him into the ground next to his grandmother, who died when Rory was 3.
“Spiritually, emotionally, we couldn’t bear the thought of him lying alone in a graveyard without anyone around him and where no one knew him,” Staunton says. “So we buried him where we know friends and family visit all the time.”
Staunton is quiet for a moment, thinking. “Does that make sense?” he asks. Nothing seems to anymore.
“You see your child’s name on a headstone…” he begins. His voice, already barely above a whisper, breaks, trails off.