I checked tonight it’s 2,190 days since I last saw my lovely Rory, six years, a lifetime. If anyone thinks that losing a child gets easier with time, I’m here to tell you that no, it doesn’t get easier, it’s a life sentence. I still lie awake at night, I still think about what happened all the time and I still love my young boy as if it were yesterday. No time, no months, no days, no hours will every change that.
I want Rory’s name to live on forever because he deserves that. His life story should not end because he and us, his loving family were let down by a lot of people and institutions we trusted; his school, his pediatrician and the hospital that we brought him to, that sent him home when he was very ill. Rory’s love and his spirit keep us going and will continue to keep us going forever.
Noone should die from sepsis because it’s preventable. Yes, infections happen all the time, but people don’t have to die from an infection, particularly a healthy 12-year-old boy like Rory. I am an angry mom because noone diagnosed sepsis in my child despite our pleas, they ignored our concerns and I am angry for every child and every loved one that dies from sepsis because it doesn’t have to be that way.
So, social media is very important to me. It makes a difference that people read about Rory and sepsis because awareness saves lives. I can’t bring Rory back but I can save others from going through our hell. If you know Rory’s story, or Emily Aiello’s story, or Clover Harrold’s story and so many other loved one’s stories that have died or suffered from sepsis then we can save lives because people will have the knowledge they need to ask questions.
I want to thank all our family and friends and everyone for their support throughout these awful years. Without your support, we would not be here. We will keep on fighting, although at times it is so very hard. But, It is harder to think of Rory’s death and to think that his death might be the end of his life story.
Rory’s love will keep us strong and his love will make a difference in this world. I wish others in power had spoken out before he died and I will never forgive those who could have made changes and didn’t. I am not going to lie, life and people have disappointed us, but we are fighters and together we can make a difference; we can all keep fighting for change, for more awareness and fewer deaths from sepsis.
Sepsis is responsible for 3,000 deaths each year in Ireland. 60% of hospital deaths are related to sepsis, which kills more people in Ireland than heart attack, breast cancer, and lung cancer. Concern over the sepsis death toll in Ireland led the Rory Staunton Foundation and the Royal College of Surgeons Ireland to commission a study aimed at better understanding the Irish public’s understanding of sepsis. The results of the survey are startling: Just 28% of survey respondents have an accurate understanding of sepsis, which places sepsis awareness in Ireland well below awareness in the United States and the United Kingdom.
Ciaran and Orlaith Staunton have been actively involved in sepsis advocacy in their native Ireland since Rory’s death in 2012. Last month, Ciaran Staunton addressed the Royal College of Surgeons at their public lecture on sepsis. He has previously addressed healthcare professionals at Cork, Limerick, and Dublin.
It took courage to wake up and open my eyes on Christmas morning. It was Christmas Day and five years since we have celebrated Christmas with Rory. It doesn’t get any easier for us, his family, and we know we share this loss with so many other families who have buried loved ones.
The holiday season is difficult, and along the way, during the last five years, we have learned to wrap the joy we experience at this time of year with the intense sorrow that the season brings.
So – hug your little ones even closer during these precious holidays. Make sure to make memories that can be treasured forever. We have special little moments that we hold dear from times past, they are our treasures. These moments are the true meaning of life.
From the very beginning, the Rory Staunton Foundation has been committed to educating young people about sepsis. Understanding sepsis and its signs often means the difference between life and death. People who know the signs of sepsis know to seek immediate medical attention. They know that they must advocate for themselves or their loved one to get the rapid treatment so critical to survival. Sepsis education is the key to reducing the catastrophic sepsis death toll.
2017 was a very big year for the Foundation’s mission to advance sepsis education. Together with the New York State Departments of Health and Education and the American Federation of Teachers (AFT), we developed a comprehensive K-12 sepsis curriculum. The lesson plans and accompanying resources progressively educate students about how to care for minor wounds using a ‘back to basics’ approach, how infections spread, and the signs and science of sepsis. Older students even have the opportunity to create sepsis awareness campaigns to educate their communities.
On October 24, Governor Andrew Cuomo signed ‘Rory Staunton’s Law’ bringing our sepsis education curriculum to the 3 million children enrolled in New York City Schools. We are delighted with the progress made and look forward to 2018 when we will be working hard to ensure that every school child in America has the knowledge they need to protect themselves and other.
Watch a short video of our education lesson plans in action!
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!
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.
The Rory Staunton Foundation, the leading sepsis advocacy group for children is delighted to welcome Lucia Di Spigno, RN, MSN, CPNP, CCRN as our newest board member. Lucia is currently a Nurse Practitioner in the Pediatric Intensive Care Unit at Cohen Children’s Medical Center in Long Island where she also leads the sepsis data collection and sepsis education program. As a nurse specialist who has worked as part of a Pediatric ICU team for over 30 years, we believe that Lucia will provide us with invaluable insight and education into the role of nursing in critical care.
As parents who have stood at the bedside of a seriously ill child we can attest to the importance of our nurses who stand in the front line. Not only do pediatric intensive care nurses provide the best of care to our children but they also assume the role of family as they help you withstand the shattering impact of sepsis.
It is an honor to welcome Lucia to our Board.
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.