Lucas’ Story

As Rhode Island moves ever closer to adopting statewide sepsis regulations, we’re bringing you the stories of the children who inspired them. Below is the story of Lucas, a beautiful, bright-eyed little boy who tragically lost his young life to sepsis. His parents have played a large role in the successful campaign for regulations in their state.

LUCAS, by Courtney Dewar, Lucas’ Mom

“Our sweet Lucas blessed us with his happy, little face for 13 months and 8 days before he gained his angel wings. Never, ever did I expect to lose a child and certainly not as suddenly and unexpectedly as I lost my sweet baby.

Lucas was admitted to the hospital in the early morning hours of Sunday, April 29th, 2018. In the days prior he had some minor cold symptoms, but nothing alarming. I took him to his pediatrician on the morning of April 28th and although his fever had spiked to 105 degrees, she wasn’t alarmed. She said he looked like he might be developing an ear infection and sent us on our way with antibiotics. I am haunted by that interaction and wish I had questioned that diagnoses, but as a mother of two young boys who have had countless colds, stomach bugs, ear infections, etc., I simply figured a round of antibiotics and some rest would do the trick.

By the time Lucas was admitted on Sunday morning, he was deteriorating quickly. His breathing was labored and he wasn’t responding well to breathing treatments. A chest x-ray confirmed pneumonia and several types of antibiotics and fluids were given intravenously. After several hours without improvement, his lungs were filling with fluid, his oxygen levels were low, as was his blood pressure, and his heart rate was dangerously high. This was all happening so quickly, my husband and I simply could not grasp how our healthy boy was suddenly so dangerously ill. We had no idea that when he was sedated to insert a breathing tube and a tube to drain his lungs, that he would never again wake up. The drainage was unsuccessful, and he was still failing.

By Monday morning, the doctors were educating us about sepsis and discussing a very risky, yet possibly life-saving procedure. He would be put on an ECMO machine, or a heart-lung bypass machine, which would allow his lungs and heart to heal and ultimately “buy some time” so his little body could fight this infection. The procedure came with many risks, mainly kidney failure, internal bleeding, blood clots and stroke. My husband and I were terrified but without it, we were told Lucas wouldn’t survive another 24 hours. After two days of being on the ECMO machine, he was showing great progress. I thought, just maybe, that the odds had turned in our favor and that we’d walk out of the hospital with our sweet boy.

On Thursday, May 3rd, 2018, my husband and I returned from the hospital cafeteria to see a group of doctors and nurses outside Lucas’ room. We knew this wasn’t good. We were told that they suspected bleeding on his brain and immediately ordered a CAT scan. We dropped to the floor. Although we were hyper-aware of complications, we were cautiously optimistic about his progress. Shortly after, while my husband and I prayed fiercely in the hospital’s chapel, we were given the news. Our sweet Lucas suffered a massive stroke and there was nothing more that they could do.

That afternoon, I crawled into the hospital bed with my sweet baby and held him as they disconnected the machines. That is something no mother, no parent, should ever have to do. The cause of Lucas’ death was technically a stroke, with the secondary causes being sepsis and pneumonia. However, sepsis is the true cause of death in my mind. The infection ravaged his body, making it too weak to fight the bacterial pneumonia and causing him to have to be put on the ECMO machine, resulting in his stroke. I will spend my life remembering Lucas and educating others about his brief battle with this devastating illness. No parent should have to witness their child go through that, ever.”

Just in Time for Easter/Passover Break: Our New Infection Prevention Coloring Book!

Looking for something fun and educational for the kids to do over the Easter/Passover break? How about a coloring book that teaches kids about the importance of infection prevention and caring for cuts and scrapes with the help of some wacky characters? Teach your kids “the three ‘C’s” of effective wound care–Cut, Clean, Cover!

Download the coloring book here.

Please send us photos of your completed pages (or pictures of the coloring process!) to info@rorystautonfoundation.org. We’d love to see them (and will post to Facebook)!

This coloring book comes to us from Judy Brohm, a registered nurse and Sepsis Champion at Clark Memorial Hospital in Indiana. With the creative help of a colleague, Bill Greene, Judy created this coloring book for Child Safety Day after meeting Ciaran and hearing his story at a conference of the Indiana Hospital Association. We love the concept, which shows that we can ALL do our part to protect families from sepsis.

Neglect Killed Rory.
The Disease was Just the Ammunition.

This week is Patient Safety Awareness Week 2019. As most of you know our son Rory died in April 2012. Although Rory died from sepsis, Rory, like many other sepsis victims also died from medical error. Medical error, the term is clinical, almost abstract. As a parent of someone who died from medical error, I can tell you there is nothing clinical or abstract about your loved one dying this way. The knowledge that someone or, as in Rory’s case, many people, could have said or done something to save him will haunt us until the day we die. Rory was an innocent 12 year-old-child, for God’s Sake, he told everyone how he was feeling, he trusted the medical professionals who were “listening” to him. Our family asked for help-and our family were failed.

 
The New York Times journalist Jim Dwyer commented in an article for Irish America Magazine in 2013 ” Every single possible bad thing that could happen, happened, to Rory and resulted in accelerating his decline. Nobody intervened when intervention might have helped. Every time there was a chance to do something for Rory there were steps that weren’t taken and people who didn’t know that there was a problem.”
 
As I’m writing this I’m thinking also of David and Katie and Emily and Isabella and Jeff and Wes and so many other victims families that are suffering during this “Patient Safety Awareness Week.”
 
Yes, be your own advocate-we strongly advise people to empower themselves and others by asking questions and making sure tests are reviewed and that health professionals are practicing good hygiene, we write about this all the time.
 
But, consider something more; consider that health professionals are human and sometimes they will not correct course, as happened in our case. Consider that there are some doctors and other professionals who will not accept being questioned.
 
I, for one, would love to see more honesty in this area. This is not to bash health professionals, I hold too many in high regard to do that. But there is much advice being given this week about being your own advocate, and I also want to read some honest articles from medical professionals who have erred. To err is human, but we need to hear people say “we made a mistake” and learn, we have much to learn.
 
In 2013 when interviewed for the same article in Irish America Magazine I spoke about our experience during Rory’s care and said:
“Pediatric emergency rooms are scary places for children and family. “Parents need to have a clear communication channel available to them. They need to be informed as to who is the doctor in charge of their child’s care, what blood tests or other tests have been ordered, their results, the diagnosis being made and any other possible diagnosis being considered and what change in the patient’s condition would require that they return immediately to the ED. They also need to be given a telephone number for follow-up questions should changes they are concerned about take place.”
 
In New York State as a result of Rory’s death, the Rory Staunton Foundation worked with the State Health Department to introduce the Parents Bill of Rights which mandates a clear level of communication in Pediatric Emergency Rooms throughout the state, it is a checklist and a stop sign for medical professionals. We would dearly love to see this in every state.
http://www.health.ny.gov/publications/1470.pdf
 
As someone wrote: “Neglect killed Rory. The disease was just the ammunition.”

We Believe We Can Do Better
Than CMS’ SEP-1 Guidelines. Here’s Why:

rory staunton foundation, sepsis, cms, rorys regulations

We are often asked how Rory’s Regulations, adopted in New York State to facilitate the rapid identification and treatment of sepsis, differ from the CMS sepsis regulations, known as SEP-1. Our answer is that the differences are major and important, leading us to believe that CMS’s guidelines are far from the best means of ensuring a positive outcome for sepsis patients.

Here are a few of the most important differences between Rory’s Regulations and the CMS guidelines:

  1. While Rory’s Regulations cover all patients suspected of having sepsis, including pediatric patients, CMS guidelines exclude many patient groups, including children and transfer patients
  2. Rory’s Regulations require all relevant hospital staff to be trained in sepsis diagnosis and treatment; CMS guidelines do not
  3. Rory’s Regulations require each hospital to develop a set of evidence-based written protocols overseen by the Chief Medical Officer; CMS guidelines do not
  4. While all hospitals in New York State are required to implement approved sepsis protocols, reviewed by the Department of Health, only 50% of hospitals use SEP-1.

Finally, it is important to note that while the SEP-1 and its impact remain controversial in hospitals, the data yielded thus far from Rory’s Regulations have clearly shown their effectiveness:

  • In their first 30 months of implementation, sepsis protocols in New York State reduced the odds of dying for adult sepsis patients by 21%.
  • Sepsis mortality for pediatric patients was reduced by 40% when protocols were correctly administered

We strongly recommend that states adopt the New York sepsis protocol model in which clear protocols are developed, hospitals are help accountable, and data is collected and analyzed to improve care and reduce sepsis mortality.

Rory Staunton Foundation, CMS, Sepsis, Sep 1, sepsis kills, sepsis

Young Irish Mother Dies
One Week After Giving Birth

Karen McEvoy, Young Mother, Sepsis, Sepsis Kills, End Sepsis

Karen McEvoy died as a result of “multiorgan failure with septicemia” a coroner in Ireland reported. Karen had given birth to a baby girl on December 18th, her third baby. She visited a primary care clinic on December 21st because she was experiencing flu-like symptoms, severe back and pelvic pain, and sweats, she visited a hospital on December 23rd. On Christmas Day, she died. At no point did anyone ask: Could this be sepsis?

Sepsis is a leading cause of maternal death. Maternal sepsis usually occurs due to a severe bacterial infection of the uterus during pregnancy or immediately after childbirth. Though more common in developing countries, maternal sepsis is also prominent in developed countries, including the United States. According to the Centers for Disease Control and Prevention, maternal sepsis causes 12.7% of pregnancy-related deaths in the United States. Despite being highly preventable, maternal sepsis continues to be a major cause of death and morbidity for pregnant or recently pregnant women.

Sepsis or Flu?
How to Tell the Difference

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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!

Christmas Is A Raw Lonely Time When You Bury A Child

Rory Staunton, Rory Staunton Foundation, Sepsis Kills, Death of a child, Christmas

Christmas is a raw lonely time when you bury a child. Awake early this morning working on Rory’s book I found this treasure my brother wrote a year after Rory died. Always missing you Rory…

“A memory of a boy and a Christmas past casts a long shadow.

In the beginning of that day around 2005 in the Christmas time, I remember we arrived at their house in Queens to help with the tree trimming and enjoy the compliments of the season.

It was cold outside and hot coffee and an Irish breakfast helped line our stomachs and prep us for the task on hand.

The little red-headed boy had spread his train tracks all around the tree.

Bobbing and weaving the tracks ran in and out, and a vintage old train steamed along whenever it didn’t come off the rails.

The boy was already adept at fixing every little wobble on his track and explained excitedly that the train had been modeled on one from the old Indian railways. He explained in precise detail that India had an amazing rail system that he had been studying.

We took it all in as uncles and aunts and cousins do, would have stroked our beards if we had them and concluded what a clever little lad.

The tree itself was bare but as soon as we began to dress it the Christmas lights sparkled and the ornaments, many from our childhood that my sister saved, went up one by one.

Decorating the tree was like meeting a familiar friend a year later, reminding me of the bond that Christmas brought especially to emigrant families, transferring us across an ocean back to a time and place where seven of us children dressed a tree and our parents stood by.

Here we were in Queens, New York, in the same ritual timeless as it was, knowing that bond that connected us for generations was renewed again by this very act.

My parents had touched these same Christmas ornaments now our kids were touching them. The great stream of life continued to flow.

Back then the box holding the tree was full of old shoes to make sure the tree stood up straight as there was only a bare bark with no stand to secure it.

It was the boy’s turn to place the angel on top of the tree and he did so as I and his father lifted him up remarking how heavy he had become from the previous year.

After that, the bedraggled uncle was pulled aside by the boy to discuss the North Star and the positioning that Santa would use.

He indicated that the light from the star was hundreds maybe thousands of years old and that we only saw it as it was back then. How could Santa navigate with such uncertain lodestars, he asked me.

I had no clue but there was no escaping his keen intelligence, his eyes boring into me as the questions flowed about time travel and how Santa could make Australia and Europe in one 24 hour period. This conversation was about four years too early, I thought.

I knew enough to say nothing merely to point out that Santa was capable of all things, and that I would not be surprised at all if he had a special magic to do all that.

The boy sat down with an extremely dubious look on his face and I escaped to gulp my first glass of red wine, welcome after the endeavors, physical and mental.

The boy was special; there was no doubting it. What he would become is impossible to say.

Your child or nephew or niece is your ambassador to the future the person who will bear the memory of you when all have forgotten and carry it on to the next generation.

That is incredibly important for us humans incapable of time travel that someone is there to tell the future generation who and what we were, that we walked the earth, dressed Christmas trees and loved each other.

The boy would never get to carry that information or fulfill his incredible promise. He was dead a few years later killed in a case of dreadful medical malpractice that made it to page one of the New York Times for all the wrong reasons.

That house in Queens will be dark this year, no tree trimming. The family will instead be in Ireland to be near to where he was laid to rest with his beloved grandmother and grandfather, It is the toughest time of year next to his birthday.

Our Christmas now? It is never the same, and we do our best for those left behind and ourselves. But that shining North Star has dimmed forever in my mind.

Rory Staunton, wherever you are, we miss you and love you this Christmas and forever.”

Your Uncle Niall

AAMC News: How Five Hospitals Are Drastically Improving Care

Rory Staunton Foundation

The American Association of Medical Colleges News (AAMCNEWS) Lists Five Ways that academic medical centers are improving patient care, saving lives and reducing costs. 2 on their list is Reducing Sepsis Risk in Children.

Reporting on the recent study published in the Journal of the American Medical Association (JAMA) which showed that adopting Rory’s Regulations mandatory sepsis protocols that require hospitals in New York State to provide antibiotics, fluids and take blood cultures within 60 minutes of suspected sepsis reduced the odds of death by 40% compared to children who did not receive all three steps.

To read the original article on AAMC News, please click here.

What Sepsis Awareness Month
Means to Me

Signs of Sepsis, Sepsis Kills, Rory Staunton Foundation for Sepsis Prevention, Rory Staunton Foundation, Sepsis Education, Awareness and Prevention, Rory Staunton, Orlaith Staunton, MomsRising.org

I walked around lower Manhattan a few days ago; it’s an area I try to avoid because it’s where our Rory died. I could feel the terror start to build up again in my body as it does when I am around there, near the hospital where he died. It’s like a newsreel rolling continuously in my head, reliving the last few days, the last few hours of his life, of our lives, as we knew it.

I remember being in the room when the nice doctor came in to tell us Rory had died, and I remember screaming at that nice doctor who had tried so hard to save him in the Critical Care Unit. I remember screaming at him: “I brought him here, I brought him here and you (the hospital) sent him home, ” screaming, wailing, at the top of my voice. When we brought Rory to the hospital and to his pediatrician a few nights earlier they sent him home with a diagnosis of gastric flu even though he had all the symptoms of sepsis and indeed was in septic shock.

But Rory was gone and we will never get those days, hours or minutes back. All the good parenting, the safe parenting we had been practicing for our entire lives-the intentional parenting of bike helmets and knee pads, the baby gates, the seat belts… everything we do and did as good parents… gone, because noone, not one single person that we brought Rory to who SHOULD have known to check him for sepsis, did so. And so he is dead and our lives will never be the same.

What Sepsis Awareness Month means to me is using the opportunity to spread the word about sepsis everywhere we can. Wherever you see articles about sepsis this month share them, talk about sepsis, make sure your loved ones know about this preventable death. Please share.

Sepsis Downloadable Resources Available From
The Rory Staunton Foundation

Rory Staunton Foundation, Sepsis, sepsis awareness, sepsis resources, downloads, sepsis downloads, sepsis fact sheet,

The Rory Staunton Foundation offers downloadable resources to help you understand sepsis and its causes. We provide printable brochures and fact sheets explaining what symptoms to look for, how to treat this illness as well as prevention tips to stay healthy.

Check out all the resources available by clicking on the Library tab above and navigating to the Downloads section. Through sepsis awareness and education, we believe that lives will be saved so we provide these valuable resources free so everyone asks “could it be sepsis?” and thinks sepsis!