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!
What an incredible effort from the Eurotech Crew!
With donations still coming in, the amount raised from their #NoShaveNovember challenge is actually a whopping $35,850!!
We are so appreciative of the generosity of the beard-growers, their photographers and the many sponsors of the stubble! The funds you raised will help us continue our work saving lives from sepsis.
Again, a huge thank you to all involved!
There are a number of ways to support the lifesaving work of the Rory Staunton Foundation this giving season!
- On Giving Tuesday, choose the Rory Staunton Foundation as your charity of choice and give generously to support our sepsis education and awareness programs and help create a future without preventable deaths from sepsis. Donate online or by check: https://rorystauntonfoundationforsepsis.org/donate/
- When you shop on Amazon, log in to AmazonSmile.com instead to donate as you shop! Nominate the Rory Staunton Foundation as your charity of choice and .5% of the value of your purchase will be donated by Amazon at no cost to you! You can log in here: https://smile.amazon.com/ch/46-1021898
- Donate anytime throughout the holidays online here or by check: https://rorystauntonfoundationforsepsis.org/donate/
Thank you and have a healthy, happy, and generous giving season.
Read Orlaith Staunton’s article in The Huffington Post here – “I am a mother who lost a child who could have been saved…”
Below is Orlaith’s story and call to action which was featured in The Huffington Post. Please read and share – the information here could save a life.
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.