We spoke at length to the medical community and families when Rory died and we all agreed that people need to know about sepsis the same way we all know about meningitis.
Education is the key component to this and we are delighted that a major college newspaper has published an editorial about sepsis including Rory’s story and how it could happen again tomorrow to anyone. The editorial also calls on all states to include our educational lessons that are available to all students in New York State. This is a great step forward.
To read the original article on The Villanovan, please click here.
On November 3rd, 2017 Chris Aiello, Secretary for the National Family Council on Sepsis shared the story of his daughter Emily’s tragic death from sepsis and stressed the importance of early detection of sepsis and the need for community involvement to implement effective diagnostic protocols at Health Watch USA’s 11th annual Patient Safety Conference. In a compelling speech (see video), Chris told conference attendees that mandatory sepsis protocols were needed in each state. Other speakers at the conference included past U.S. Surgeon General Joycelyn Elders, Pulitzer Prize-winning investigative reporter Deborah Nelson, Lisa McGiffert from Consumer Reports and Ivan Oransky, Co-Founder of Retraction Watch.
March 28, 2012, Rory was very, very sick. We ran from our house carrying him; he was too weak to walk. It was only one day since his pediatrician and a “top” New York City hospital had sent him home to get better with no medication, nothing. They had told us to give him time, that he would get better. As we ran with him back to the hospital, his little sister watched on with horror.
At the hospital, the same hospital that had discharged Rory the day before, everything was different. The doctors and nurses ran to meet us and Rory was settled in the Intensive Care Unit. Over the next 48 hours these wonderful doctors and nurses at the ICU fought like crazy to keep Rory alive and fought like crazy for us, to make sure we were o.k., to find us quiet moments to love our son, to allow us to gather, to try to give us time.
It was in the early hours of Saturday morning when the lead doctor approached us. “I think we have some hopeful news” he said. “We may only be looking at amputating some of Rory’s toes and part of his nose.” “It’s early days though,” he cautioned. I screamed silently in my head, and retreated and cried about a conversation I might be having with the most beautiful boy in the world telling him that he would lose parts of his body because of a scape on his arm. An injury he had pleaded for help for and had been turned away by his school, his doctor and his hospital. How would I tell him, how would we cope…
Sadly, it turns out we didn’t have to plan that awful conversation because everything got worse not better in the remaining hours. Septic shock is a ticking clock, and those who have been through will tell you this. If the toxins win, time runs out and your loved ones dies, if you survive and you beat the toxins more often than not you have a huge range of problems in addition to PTSD.
I dearly regret that I never got to have that conversation with Rory-the one I was dreading, the one that that would have gone something like… “I love you, you are alive, but you have injuries.” instead I cradled his dead body for hours and now like so many other parents dream about him for a lifetime.
The sun was intense as I dropped by to say hello to Rory at his grave in Drogheda last week. I was visiting Ireland and our house is beside the cemetery where we laid him to rest. I thought a quick drop-by would be nice on my way to town. Always on my mind, always in my heart, visiting Rory is part of my routine when I am in Ireland.
I always talk out loud to him, “Hey Rory-how are you doing…everything is good…we miss you…let me see how your flowers are doing, do they need water?” This is often how our conversation goes. For me Rory is in my heart, and his grave is a memorial to him. Most times I can drop in and out of the cemetery and my lips don’t tremble, tears don’t fall because he is not there, I tell myself, it is a memorial.
Last week his eyes caught mine. His soft face on his headstone smiled and I caught his earnest look and his beautiful deep eyes met mine. It was one of those moments when time stood still and all I wanted to do was sit and look at him and love him alive, all over again, and again.
I talked to my little boy about how he wanted to be a pilot, I talked to my little boy about how he loved visiting Ireland and how he loved to ride his bike and be with his sister and cousins. I talked to him about American politics and laughed with those eyes about how many debates we would be having, as there was so much strangeness in the world. I talked to my little boy about his Irish cousins, those he never met but would have loved, and those he knew and loved, and I remembered with my little boy how he used to speak with an little Irish accent when he came here to visit. I talked and I talked to the beautiful deep eyes on his headstone. I could have stayed all day.
The little boy with the beautiful deep eyes did not talk back.
After a long time I left the cemetery and continued to town; my day had changed. My thoughts had shifted. My pilot, my little boy, was dead. I cannot hear his responses, I can pretend I know what he thinks but he cannot tell me.
Damn you sepsis. I have met so many sepsis moms and dads who have conversations with their children in cemeteries. Cemeteries are sometimes places of comfort but are often places of anger and despair. Our children should be fulfilling their dreams, they should be alive and they should be with us because sepsis is preventable, treatable and curable. We have been cheated.
I told this to my little boy with the beautiful deep eyes, I told him I felt cheated.
TG4 (Irish TV) will broadcast Rory’s documentary Dlí Rory: Dóchas Ó Neamh (Rory’s life: Gift from Heaven) again on Wednesday May 17th at 8.30pm Irish time on TG4. It will also be streamed on-line during the broadcast slot. www.tg4.ie/en/player/home/
Rory should have celebrated his 18th birthday last weekend. Instead in the five years since he tragically died his parents Ciarán and Orlaith have fought to change how sepsis is managed in our hospitals.
Rory’s Law was enacted in New York State in 2014 and since then has been credited with saving more than 5,000 lives. The Stauntons continue their battle to have Rory’s Law introduced across the United States and to improve the standard of Sepsis management around the world so as to ensure that no other family has to go through the suffering that they did.
Dlí Rory: Dóchas Ó Neamh will be be broadcast internationally on the TG4 player: www.tg4.ie/en/player/home/
Good morning my love, we miss you so much. Today is a special day in the life of all who know and love you. We who love you and miss you terribly, think about what our life would be like if you were still here with us, and we are full of questions that we will never have answers to. But we know for sure that if you were here you would be looking forward to this phase in your life; the adventure of college and the beginning of your adult life. Your eyes would be shining, your gaze would be fixed, and your heart would be full.
You were fascinated by the sky, one of your many dreams, probably your most sacred, was to be a pilot. I often look to the sky for solace when I think of you, when I find it hard to catch my breath. There will never be an answer as to why you died so young and so tragically but as long as there is a sky and there are stars and there is a universe…you are there.
Those of us who know and love you, your dad, your sister and me especially, know that.
“In one of the stars I shall be living. In one of them I shall be laughing. And so, it will be as if all the stars will be laughing when you look at the sky at night.” – Antoine de Saint-Exupery,
Rory is dead five years today.
We love and miss him so awfully much. He believed in the good of others and always tried to find that good in those he met. Although he was young, this was his way.
We, those who adored him, have no milestones to look forward to this year as we had dreamed. There will be no graduation, there will be no eighteen-birthday party, and there will be no college for him either. He was not even a teenager when he died, just 43 days short of thirteen years of age.
Rory loved life so much during his short time in this world. His sister Kathleen… he loved her more than anyone or anything in the world; his eyes danced with delight when they joked together. He loved and he was loved and he is loved.
He was courageous and funny and true. We learned much from him about dignity and respect and laughter and justice and goodness. We desperately grieve for the life that might have been had he not tragically and painfully died but we do so delicately cherish the short time we had with him.
Today and everyday we thank everyone for the love and kindness that has been shown to us since Rory died. April 1st, 2012 is a day that shattered our family. We are heartbroken to this day and we will be heartbroken forever, but the support of family and friends both old and new means so much… thank you.
Our wonderful boy is gone five years today.
Orlaith, Ciaran and Kathleen
Ciaran Staunton, representing the voice of a sepsis parent advocate will speak on behalf of the Rory Staunton Foundation at the 5th Annual World Patient Safety, Science and Technology Summit in Dana Point, California. This important annual Summit brings together international leaders from hospitals, medical and informational technology companies, the patient advocacy community, public policy makers and government officials to discuss solutions to the leading challenges that cause of preventable patient deaths.
The summit will see keynote addresses from many leading figures including President Bill Clinton, 42nd President of the United States and Vice President Joe Biden, 47th Vice President of the United States, Joe Kiani Founder, Patient Safety Movement, Rt. Hon. Jeremy Hunt, MP Secretary of State for Heath in the United Kingdom, Patrick Conway, MD, MSC CMS, and of course The Rory Staunton Foundation’s Ciaran Staunton who will be part of the prestigious group of speakers taking part in the Healthcare Technology Leadership Panel, a video filmed by the Patient Safety Movement about the work of the Rory Staunton Foundation will anchor the panel discussion.
We congratulate The Patient Safety Movement for their tireless efforts to improve patient safety and believe that these organizations and individuals will collectively change the world of preventable deaths and the horror that families live with in the aftermath. Rory Staunton Foundation is the leading sepsis advocacy group in the United States and the National Family Council on Sepsis in the only family driven sepsis advocacy group in the United States comprising families who have lost loved ones to the preventable death of sepsis. The Rory Staunton Foundation and the National Family Council on Sepsis demand mandatory sepsis protocols in all hospitals throughout the United States.
A new study has found that sepsis is the most common cause of re-admissions among conditions tracked by CMS in 30-day readmission rates according to a new study published by JAMA.
Why is this important?
It’s important because sepsis does not get the attention it deserves as a killer of over 258,000 Americans every year. Not only do we know that sepsis protocols save lives but this research paper shows that sepsis accounted for 12.2% of re-admissions to hospitals in comparison to heart failure 6.7% and pneumonia 5.7%.
The report also concluded that in addition to being the most common cause of readmission to hospitals, the mean length of stay for sepsis re-admissions was longer than that for heart failure, pneumonia and other more well known conditions. Another startling fact they discovered is that re-admissions for sepsis is more common at some hospitals than others and that it is the most expensive condition billable for length of stay at a hospital.
In November 2016, members of the National Family Council on Sepsis met with CMS staff in Maryland and engaged in a very worthwhile discussion about sepsis. CMS staff showed a deep understanding of the magnitude of the sepsis problem and an eagerness to roll up their sleeves and make the changes necessary to save lives and save the US economy billions of dollars.
Read the JAMA article here: