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:
Rory died in April 2012, almost smack in the middle of the Obama Presidency. We as Rory’s mom, dad and sister didn’t know about sepsis. Rory was one of two million Americans who died from sepsis during the Obama Presidency. When Rory died, we didn’t know that sepsis killed more Americans than AIDS, prostate cancer and breast cancer combined, killing over 250,000 Americans every year. We didn’t know that sepsis contributed to 1 in every 3 deaths in U.S. hospitals and that sepsis was costing the U.S. economy over $20 billion a year.
This isn’t a political blog, because millions of people have been dying from sepsis through all administrations in the recent past- it’s just that we as families now know the facts now and we are demanding change!
Tragically, sepsis killed our beautiful child in a matter of days and we have since learned that a cure of simple I.V. fluids and broad-spectrum antibiotics would have saved his life. We had no warning; CDC, the U.S. Federal agency charged with the health protection of Americans didn’t even have sepsis listed on their website. Going forward we want to ensure that in this new administration sepsis receives the attention it deserves.
Today on the eve of change, when it comes to sepsis, we choose hope. We choose hope because we at the Rory Staunton Foundation have raised awareness of sepsis to a whole new level. We have created a national educational program, we set up the National Family Council on Sepsis, we engaged the CDC until they declared sepsis a ‘national emergency’ and we had the first ever Senate Hearing on sepsis. We have screamed and we have kicked and we opened doors that were previously closed and we have met and worked with the best of people: doctors, nurses, families, parents and politicians.
We spoke to President Obama and to his Vice-President Joe Biden about sepsis during their administration, they were sympathetic but they had other issues they deemed more important and truly those other issues were very important. On the other hand, President Obama flew to the CDC to discuss Ebola and although we understood the concern about the spread of Ebola to the US and the international implication of the disease; we always believed the level of importance given to Ebola and the money spent was misplaced. There was one death from Ebola in the United States.
You see our child Rory died in New York City from sepsis, Katie McQuestion died in Wisconsin from sepsis, Emily Aiello died in Pennsylvania from sepsis, Gabby Galbo died in Illinois from sepsis, Emily Edwards died in MA from sepsis, Teresa Brick became septic in New York. Becky Taylor nearly died from sepsis in New Jersey, Lisa Bartlett’s husband Jeff, died in St. Louis from sepsis. We could go on and on… over 2 million names actually since President Obama was first inaugurated in 2009. Our loved ones, our babies, did not have a decent shot of survival because of the lack of a national education plan, or indeed a regulatory plan like the one in New York State, Rory’s Regulations, which saves up to 8,000 New Yorkers every year. When it came to our loved one sepsis was not diagnosed when they became ill and they did not receive the treatment they deserved, remember we are not waiting for a cure, we know the cure; identification and treatment.
We believe it’s really very simple; sepsis is a killer hiding in plain sight and it deserves national recognition as such. So right now we choose hope that this new administration at the very least will recognize sepsis as the killer it is and lead efforts for a massive informational campaign that would save hundreds and thousands of lives across America. We hope as they examine regulations, as we know they will, they will understand the need to have national regulations for sepsis.
We choose hope today because we would welcome a change in national policy on sepsis, and we along with all families will fight until we get the change we deserve, the change our children and our loved ones deserve.
It doesn’t matter your party politics, sepsis has no boundaries of race, creed, age, or social status.
You see, Sepsis is an equal opportunity killer.
This Christmas Rory would have been seventeen years old and I miss him so much.
A walk along the Avenue is difficult, the jingle, the smells of Christmas, I’ve taken to putting my red earphones in my ears and walking along not hearing, looking straight ahead and not seeing. It’s one of the ways I live through the rawness of Christmas without him, sometimes stepping out of the present.
“So, you’ve been around this block before?” my grief counselor says, “yes, four years,” I reply. It’s been four long and lonely years without him.
Christmas is about the beauty of life, but the distractions of the holidays are grueling for us parents who have buried a child. The greatest gift our family could receive would be to see Rory again. Rory loved Christmas; he loved the food, the cuddles, lazing around, the gifts, and the giving. He loved hanging out with friends and most of all being with his sister Kathleen, his best friend.
The noises of yesteryear are loud. The noise of memories of Rory and Kathleen, Ciaran and myself together as a family, buying Christmas trees, decorating Christmas trees, and taking turns for Rory and Kathleen to place the angel at the top of the tree – all giggles and traditions and love with a promise for the future.
We will never have that view again but we will make lovely new memories and remember the truth of Christmas. I urge you all to savor every moment of Christmas with your children and please remember with love and say the name aloud of those who are no longer with us, those who would love to be here, like our precious son Rory.
It’s a parent’s nightmare – your child is very sick but even if you’ve been to see the doctor or been to the hospital with them, they don’t seem to be getting better, and now that you know about sepsis you wonder if it is the flu or if it is sepsis…
Sepsis or Flu? How to Tell the Difference
In its early stages, sepsis can look a lot like a common flu – tiredness, achy muscles, fever, generally feeling really weak; these symptoms are shared by both conditions in the early stages of flu and sepsis.
But as sepsis develops, there are increasingly clear signs that something else is happening in the body: Shortness of breath, feeling like your heart is racing, cold hands and feet, extreme shivering, passing no urine, slurred speech. Your loved one’s skin might become mottled with blue marks and very pale, your child has never felt so bad. All of these or even a combination of these signs are clear indications of sepsis and mean that you should seek medical attention urgently. Tell your nurse or doctor that you are concerned about sepsis. Do not delay, as every hour is critical to survival and antibiotics and fluids must be administered immediately.
Remember, too… you can help prevent sepsis by ensuring that you and your loved ones are up to date on your vaccines – including the annual flu vaccine and as always stop the spread of infection by washing your hands!