It’s been six years since Rory died, six awful years of fighting for change in the world of sepsis, as he would have wanted us to do, and as we want to do.
A major announcement occurred last week that is going to save thousands and thousands of lives from sepsis in the future. The announcement was made quietly but it will have a huge effect on the future of sepsis.
We haven’t been very familiar with the work of the Biomedical Advanced Research and Development Authority (BARDA) or the Office for Preparedness and Response (HHS) and our guess is that most people haven’t -but now is a good time to learn about what they are doing. Last week BARDA’s Director, Rick Bright, announced plans that will save thousands of lives from sepsis.
BARDA is an agency of the United States Government (Health and Human Services) and it works extremely well to protect us from future threats. “Sepsis is one of the country’s most urgent systemic health threats,” they said last week when Rick Bright, and Robert Kadlec, his boss, announced a new division that will search the world to find start-ups that will give us solutions to health security risks… specifically sepsis.
Today if you show up at a hospital with a diagnosed infection you will be administered a broad spectrum antibiotic in the hope that it will stop the infection, a blood sample will be taken and then between 24-48 hours the results will indicate what the disease is and what pathogen is responsible. This system is ridiculously slow and people are dying because with sepsis it is a race against the clock which determines if you live or die. BARDA wants to find technology that will identify infections immediately so your body won’t even have to fight off sepsis.
Simply stated: Right now we are too slow to recognize sepsis and act. The concern for the Federal Government is the future and how dangerous this slow reaction would be in the aftermath of a chemical, biological, radiological or nuclear event because those who survive the initial assault are at high risk to develop sepsis.
Sepsis now has the attention of the federal government and soon the attention of scientists and industry and the medical community and capital markets nationwide. This is a HUGE step forward. This effort will save many lives in the future and we will be offering complete support for their actions. The fact that this level of attention is long overdue for sepsis is heartbreaking but we are looking to the future.
A new website was launched last week with details. Click here to visit the site.
“I recently read your story about your beautiful son Rory and my heart broke. My 11 year-old-daughter became septic and was hospitalized for three months and your story about the signs of sepsis gave me chills because it’s exactly what happened to my daughter.
She started school for three days in September and ended up in the hospital…it was the weekend when she started getting extremely high fever and was told to take back to back Tylenol/Motrin…it was probably viral…nothing broke her fever, then the vomiting and severe leg pain started, so by Monday she got blood work done and while waiting for results I took her to urgent care for a hip/leg x-ray thinking she broke a bone…nothing…but they did a rapid blood test and said she had the flu. I was relieved.
On our way home our pediatrician called and said they found bacteria growing in her blood and to head to the Medical Center as they were waiting for her…she was diagnosed with a MRSA blood infection, it also infected her lungs and at one point they thought her heart was infected. She was on oxygen, in ICU care, multiple blown IV lines, multiple MRI, CAT Scans, X-rays, ultrasounds, developed three blood clots, abscess deep in her pelvis, and finally spread to her bones where she had multiple operations: all this from MRSA. My daughter never had skin MRSA. It went directly into her blood somehow, she had no obvious open cuts, and she was the healthiest girl, never ever sick! We were told she got it by bad luck, wrong place, wrong time-it’s a big mystery how a healthy 11-year-old got this deadly bacteria and a mystery how she pulled through.
I tell everyone that if my healthy child got this any child can get it!
I want to thank you for all the public awareness you have done on behalf of your son. I feel it’s very needed because most parents I spoke to were shocked to find out how easily a child can get this and how it presents as a virus and can go by unnoticed during the critical time. I feel the schools/parents also need to be more educated on how serious this is as most didn’t even know.
I am so sad about Rory and needed to let you that your story and your work has reached many people including myself and no child and no parent should have to go through this! In many ways your strength and Rory’s spirit is making a difference.”
Rory Staunton was born 19 years ago today, May 13th, 1999. He came into this world and we adored him from the moment we set eyes on him. His lovely sister Kathleen who is a spark of light, humor, and love, joined him two years later-it is pure joy to call them my children on Mother’s Day.
I’m a mom because of these two special children. Rory is in Heaven, and there is a profound sadness for all of us because of that. I try not to think of him there, so far away from my hugs. Rory had big dreams. He wanted to fly, and I hope he is flying high, watching over us, witnessing our love for him from afar, he is in our hearts forever.
So, Happy Birthday Rory, it shouldn’t be this way.
We can never over value the importance of nurses in our society. I remember the awful loneliness and fear I felt when I was beside Rory’s bed in the Intensive Care Unit and I think about those nurses, our angels, as we thought, providing medical care and comfort to Rory and us. We see how important the nursing profession is every time we visit hospitals and other healthcare settings, where nurses provide us with a wide variety of special services.
But, have you thought about school nurses and the central role they play in our lives?
School nurses are often the people advising parents to seek medical care based on the symptoms the child has. Last year at the Rory Staunton Foundation National Forum in Washington D.C. Melinda McCartin, a School Health Nursing Administrator spoke about their central role in the community.” School nurses are frontline responders and leaders that have an impactful role in promoting and modeling best infection control practices in the school community,” she said. When you think about it a good school nurse provides a central role in educating us about influenza and other illnesses, and they can tell us about the warning signs of many illnesses.
With this in mind it is really important that school nurses know the signs of sepsis and talk to parents and students about how important it is to watch for the signs. Time is crucial in sepsis cases and with more than 80% of sepsis cases originating in the community, nurses can and do save lives.
We are committed at the Foundation to returning to the basics of healthcare.
It seems like somewhere along the way basic actions that can help us stay healthy and strong have been brushed aside. We know that if our son’s wound had been cleaned when he fell and the gym teacher had placed a Band-Aid on the wound Rory would be alive today. Instead tragically, Rory’s wound was not cleaned and it became infected, even worse the teacher placed a bandage on a dirty wound. So please remember the following:
Remember the Three C’s!
If you get a cut, clean it then cover it
These simple steps can protect you from dirt and germs that cause infection
How to clean a cut:
Stay Healthy and Strong!
We received an inspirational letter from Caroline, a seventh-grade student in New Jersey who is promoting sepsis awareness through her school district. Her letter is below along with a picture of her School Superintendent, Nicholas Diaz.
Thank you Caroline!
My name is Caroline. I am a seventh grade Honor Roll student and Girl Scout Cadette, who loves my family and enjoys playing many sports.
I became aware of the danger of sepsis from an article I recently read in PEOPLE.com about Rory’s story. After reading the article, I was shocked and sad to learn that someone could get so sick from a cut and that so few people are aware of the signs of Sepsis.
Since there are no laws in New Jersey about reviewing the proper procedure on how to clean cuts with students, I am proactively helping my community for my Girl Scout Silver Award by raising Sepsis awareness. For my award, I will be asking my school district PTA to fund my purchase of the book, Ouch! I got a cut! for all the elementary school classrooms in my district. The goal is for the book to be read to the classes in September during Sepsis awareness month. In addition, I will be making an educational video for the students to emphasize the importance of proper care when they get a cut and introduce them the book. Looking ahead, my goal is to have the book included as required reading for each classroom in my district.
I presented this proposal to the superintendent of my district on January 2, 2018. He was very enthusiastic and invited me to present my proposal for my silver award to the PTA and to the School Board before June of this year. I couldn’t be more excited to do my part to promote Sepsis awareness and to help save lives every day.
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.