I am a mother who lost a child who could have been saved.
One Wednesday in March of 2012 my son came home from school with two band aids on his arm. He excitedly told me that he had skidded when chasing a basketball and that the gym teacher placed the band aids on his arm. Hurray! I said, well done. A little after midnight I heard him throwing up in the bathroom. When I brought him back to bed he complained of leg pain. I rubbed his leg and eased him back to sleep. The next morning he woke with a fever and we called his pediatrician who agreed to see him. Although she recorded a fever of 102 degrees, a 140 pulse, severe leg pain, blotchy skin and 36 breaths a minute, she insisted to me that there was nothing to worry about, that he had a stomach bug; she said he would be fine and not to worry but to take him to the emergency room for rehydration. At the hospital the ER doctors concurred with the pediatrician's diagnosis and sent us home with a prescription for Zofran, an anti-nausea drug.
The following day, Friday, when Rory's symptoms didn't improve we returned to the hospital. On Sunday he was dead from septic shock.
Every minute of every day I miss my son desperately. Rory adored his little sister, Kathleen. He loved to ride his bike and he loved to talk politics. Rory wanted to be a pilot and had taken flying lessons; Captain "Sully" Sullenberger was his hero. I told him and his little sister that I would die if anything ever happened to them, he would smile a lovely smile at me and I would think "nothing will ever happen."
Rory's death was so unexpected and horrifying that I thought for sure it had to be something rare. What could possibly kill a 5ft 9", 160lb healthy young boy so swiftly?
Rory died from sepsis and I have since learned that sepsis deaths are in fact incredibly common. I know now that sepsis kills over 258,000 Americans every year. The scrape on Rory's arm when he fell playing basketball had become infected, chemicals in his body that usually fight infection instead triggered inflammatory reaction into the bloodstream and began to affect the function of his organs, unfortunately this can happen with any type of infection no matter how big or small. My family and I had never heard the word sepsis before and as we now know, neither have nearly 60% of Americans.
Rory could have been saved, my son Rory could have been saved. I get a pain in my heart every time I think about that, which is all the time. Every day I remind myself that we are not waiting for a cure for sepsis the way we are waiting for a cure for cancer. Sepsis is preventable and treatable if found early and treated with broad spectrum antibiotics and IV fluids, that's all. At the time I didn't know to ask "could Rory have sepsis?" and none of the medical professionals I entrusted with his care thought about sepsis even though he had all the signs and they should have known.
The signs of sepsis are broad, and often mimic flu like symptoms including fever, chills, pain, shortness of breath, mottled skin and dizziness. Parents, caregivers and educators have to learn to look for these signs and to think about sepsis so they can notice if "something is different" and ask about sepsis.
After Rory's death I searched for information on what had killed my son and came up empty handed. The Centers for Disease Control (CDC) didn't list sepsis on it's website. I couldn't believe there was something out there that killed so many Americans; one person dies of sepsis every two minutes in the United States...it is also the biggest killer of children worldwide and it wasn't even mentioned on the CDC's website.
My husband Ciaran and I set up the Rory Staunton Foundation for Sepsis Prevention (www.rorystauntonfoundation.com). Our mission is to spare other families the pain and heartbreak that we have endured. In 2013 we succeeded in getting mandatory sepsis protocols adopted in New York State saving between 5,000-8,000 lives every year. We lobbied the CDC and in August, four years after Rory's death, they deemed sepsis a "medical emergency." We set up the National Family Council on Sepsis to act as a support and advocacy network for families of sepsis and we created a public education program about knowing the signs of sepsis. Our work is ongoing; this past weekend I heard from a mom who was on her way to pick up her seventeen year old daughter's autopsy report. The cause of death was sepsis. She asked me, "How come I didn't know the signs?"
Last month I discovered that I had been selected as one of 10 L'Oréal Women of Worth Honorees for my work raising awareness of sepsis and improving sepsis outcomes. I am very grateful to L'Oréal for this opportunity to share my story and to give sepsis the national platform it so desperately needs.
Please take the time to talk about sepsis to others, I wish someone had talked about sepsis to me and I believe my son would be alive today if I had known the signs of sepsis.