Join Us On St. Patrick’s Day!

The Kelly Gang

Exciting News!

The Kelly Gang (including famous names like Ray, Megyn, Greg, Keith) has selected the Rory Staunton Foundation as the beneficiary of their 16th Annual Kelly Gang St. Patrick’s Day benefit on Tuesday, March 24th, 2020 at Michael’s Restaurant in NYC. Click here for tickets and to learn more!

The Kelly Gang St. Patrick’s Day benefit has become a spectacular, on-of-its-kind, invitation-only gathering of New York’s City’s most influential players in media, publishing, and advertising, bringing together industry leader sot raise needed funds for worthwhile causes. Since its inception, The Kelly Gang has raised over $1 million for select charities.

You are invited to participate in this spectacular event. 100% fo your donation will go directly to the Rory Staunton Foundation to further our work to end sepsis across the country. Individual tickets are $200 each or if you like to consider becoming a sponsor at the $5,000 level, you receive then tickets to the event, year-long placement on the Kelly Gang website, reference in all media material and the opportunity to stand shoulder-to-shoulder with movers and shakers who share the kelly Gangs’s mission: giving to those who need it most.

We are thrilled to be their beneficiary this year and we hope you will join us for a casual and social evening: a cocktail reception, short program, and buffet…in good company!

For more information about The Kelly Gand and to purchase tickets to the event please visit: https://www.kellygangcharity.org/event-tickets

Thoughts from the Society of Critical Care Conference

Orlaith and I recently presented at the Society for Critical Care Medicine Conference in Florida, an opportunity to once again speak about sepsis, educate and of course, rehash the tragic events that led to our son Rory’s unnecessary death at 12 years old, in April 2012, from this vigilant killer. During the conference a new research study was disseminated. To our dismay sepsis is on the rise with no end in sight.

The study included over 9.5 million in patient hospital admissions based on contemporary Medicare data, making this the largest sepsis study known. The results are staggering. Although Medicare enrollment rates went up since the time of Rory’s death in 2012 through 2018 by 22%, there was a 40% increase in the rate of sepsis hospital admissions now costing Medicare $41.5 billion! And, the study showed that most patients arrived at the hospital with sepsis. The study predicted that in a year from now the costs to treat sepsis could rise to $62 billion! CMS and CDC are opening new pathways for the evaluation and treatment of sepsis.

What, I ask, why now? Why now? We have been here since 2012, in 2013, 2014, 2015, 2016, 2017, 2018, 2019 and are still here in 2020. Enough is enough and this is not good enough! This plague is not ending. Federal mandates must be imposed now. As life-long advocates for many causes, Orlaith and I believe that the results of this study represents nothing more than a disgraceful disregard for a curable condition and human life. Let’s not forget that those 9.5 million in patient hospital admission have names and beating hearts! We must save lives now!

We’ve Joined Forces with MoMMA’s Voices to Drive Real Change in Maternal Health

Maternal mortality

The Rory Staunton Foundation for Sepsis Prevention Joins Forces with MoMMA’s Voices to Provide Opportunities to Drive Real Change in Maternal Health 

Speak up, even if your voice is shaking

The Rory Staunton Foundation for Sepsis Prevention (www.rorystauntonfoundation.org) is pleased to announce it has joined forces with MoMMA’s Voices, a national coalition of patient organizations and individuals with lived experiences or those who represent them, using their voices to reduce maternal complications in pregnancy and the postpartum period.

The timing of this alliance is quite serendipitous in that it coincides with the work the Rory Staunton Foundation in doing to investigate maternal sepsis which is rising disproportionately in the U.S.  MoMMA’s Voice’s slogan, “Speak Up, even if your voice is shaking”, could not be more valid as the Foundation lays the groundwork to stop the cycle of sepsis in pregnant and post-partum women.  In fact, sepsis is the third leading cause of pregnancy-related deaths in the United States.

“Ciaran and I are unique in that we formed the Rory Staunton Foundation due to the untimely death of our son Rory at twelve years old due to undiagnosed and untreated sepsis.  I never want to see any mother, no matter the age of their child, born or unborn, lose their life or the life of their most precious treasure to sepsis.  It is totally unacceptable,” stated Orlaith Staunton, Co-Founder.

With the wave of media and public attention on the growing and unacceptable rates of maternal mortality and severe morbidity in the United States, this coalition answers the need for a strong consumer voice to advocate, amplify, and illustrate these issues in the U.S. MoMMA is short for Maternal Mortality and Morbidity Advocates, which captures the coalition’s mission.

We encourage supporters of the Rory Staunton Foundation who have been affected my maternal complications in the pregnancy and postpartum period to visit www.mommasvoices.org/champions to share your story, join the training, and use your voice to be a champion for change. If you have already shared your story on www.rorystauntonfoundation.com, any of our social media outlets or with another source, you can simply copy your link into the story section after completing the demographic section of the submission.

The coalition’s overarching goal is to provide a home and platform for the patient voice to actively engage in efforts to make childbirth safer in our nation. Issues like patient-provider communications, racial disparities, quality of healthcare delivery, and patient information cut across all medical conditions and heavily contribute to preventable maternal deaths and illness.  Most importantly, it will provide training and tools to equip advocates to become effective champions for change.

For more information about MoMMA’s Voices, please contact Coalition Program Manager Nicole Purnell at Nicole.Purnell@preeclampsia.org.

For more information about The Rory Staunton Foundation for Sepsis Prevention, please contact Co-Founder, Orlaith Staunton at orlaithstaunto@rorystauntonfoundation.org.

Sepsis or Flu? How to Tell the Difference

Sepsis or Flu

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!

A Thanksgiving Message from April Chavez, Maternal Sepsis Survivor

April Chavez blog

April Chavez survived maternal sepsis–but at significant cost. She is now working with the Rory Staunton Foundation to promote awareness of maternal sepsis. We are proud to share her Thanksgiving message. To learn more about April, read her story here: April’s Story.

There is no turkey in the oven, no living room full of my family watching football and no smell of pie filling my house, but today and every day since I survived sepsis, are Thanksgiving for me.

Every day I am thankful that I survived sepsis.

Sepsis is the body’s extreme reaction to infection and claims more than 275,000 lives in the United States each year, leaving many others with life-changing disabilities.

Somehow, I survived, and I get to celebrate another holiday with my family. I constantly think about the women who have died from maternal sepsis, which is responsible for nearly a quarter of all maternal deaths in United States. Those women will never know what it is like to hear their child say “mama” or be able to hold their child when they are sick. They will never know what it is like to hear their child yell “touchdown” for every exciting play during a football game. They will never know what it is like to scoop their child’s poop out of the bathtub or step on blocks in the middle of the night. Because of maternal sepsis they will not be around to celebrate birthdays and holidays, but I am.

I am thankful that I am here. I am thankful that I survived sepsis. I am thankful that sepsis did not take any of my limbs or leave me with any other life-changing disabilities. I am thankful that I can share my story in an effort to help spread awareness about maternal sepsis.

Maternal sepsis can be difficult to recognize because a woman’s body experiences so many changes during and after delivery. Changes in heart rate, blood pressure, breathing, temperature and pain are all things that might happen after giving birth, but they are also possible signs of sepsis. In my experience you can’t always rely on medical professionals to recognize sepsis. Don’t be afraid to stand up for yourself or a loved one to ask a doctor if symptoms could be related to sepsis.

– April Chavez, Maternal Sepsis Survivor

The Powerful Legacy of Little Clover Harrold

Clover Harrold

We’re honored to share these moving words by Allison Harrold, whose beautiful daughter, Clover, was snatched from her too soon. Please read about her sepsis tragedy and her initiative to raise awareness of sepsis and honor her child through the Clover Award, awarded to hospital staff who display excellence in sepsis care.

I am writing this as a mother to a child lost to sepsis. A grieving mother, always desperately searching for ways to parent her daughter who is no longer physically present. After I lost my precious Clover, I didn’t think I would survive in the world again, but without any other choice, I did. I survived by finding fellow parents that understood the hell I was going through. With the help of my sister’s expert Googling, I immediately discovered Rory’s parents and their wonderful foundation. The Rory Staunton Foundation was the lifeline that I needed to know that I could survive Clover’s loss and perhaps help others. I soon discovered doing anything I can to help prevent another child lost to sepsis was a way I could parent Clover and honor her memory.

To look at Clover was to see her dad’s reflection. My firstborn looked just like her Daddy (cute, of course!). We were speeding through the days as she was becoming an active toddler, into EVERYTHING. There was not much time to think about the day-to-day things that could potentially be fatal. When she spiked a fever one night, it seemed like it was like every other fever and we would wait it out. We became progressively worried when her fever would not break despite medication and she became increasingly grumpy. A visit that day to the pediatrician resulted in being told it was likely a virus, that there was one “going around”. The next day Clover’s fever persisted, she was very clingy, refused to eat or drink anything and she became increasingly lethargic . We took Clover to the ER where we were told she was dehydrated, and despite her still having a fever and an elevated heart rate, we were discharged. After coming home from the ER that night Clover got worse. We returned to the ER, again. The gist of the visit is that she was misdiagnosed. It was assumed the symptoms were related to some oncological issue. By the time it was discovered that she was septic, she had already progressed to septic shock and died a very short time later. There are too many details upon which to elaborate, many of which we now believe, contributed to her untimely death. After losing her blood pressure, the events spiraled downward very quickly leading to cardiac arrest. Despite being able to resuscitate her, the lack of oxygen adversely affected her brain. We decided to end life support and hold our daughter in our arms while her heart stopped beating. Clover was just shy of 10 months old when sepsis took her life.

I admire the Stauntons so much for their bravery in being able to fight everyday to help other children. After Clover died, I would learn that there would be so many days, when simply surviving was all I could do. I would learn that it was much harder to share my daughter with other people, more so than I ever thought. I still deeply felt that I needed to try and help others as a way to be the best parent I could be for Clover. We decided to share Clover’s story with the hospital where my husband and I both worked. We managed to share our experience with the hospital where she died. We spoke with a local newspaper. Sharing her story with Roper St. Francis (where my husband and I worked) would lead to the development of a Four-Leaf Clover Pin which is awarded to healthcare staff that display excellence in sepsis care. We believe that connecting staff back to a personal story, a reason for what we do, will help people continue to provide excellent sepsis care and improve sepsis outcomes.

As Thanksgiving season is approaching, I find myself thinking about its meaning. I know it is not about the “homey” smells of turkey and pumpkin pie and laying on the living room floor watching the Thanksgiving Day parade with my sibs. Its origin is rooted in survival after loss. It’s giving thanks for what allowed for that survival. When it comes to being a loss parent, it’s hard for me to be thankful at all. But I am thankful to be Clover’s mom. And I am thankful for organizations and people that are out there fighting for our babies, whether we can see the danger looming or not. We would like to continue to contribute to this fight when it comes to sepsis. My husband and I would like to see other hospitals use the Clover Pin for recognition of excellent sepsis care. Our hope is it will provide incentive and extra armor in the fight. We hope that one day a Four-Leaf Clover Pin in healthcare will automatically make people think of sepsis and always be a reminder of why it is so important for healthcare providers to identify and treat sepsis early. We also believe the Clover pin symbolizes hope, unity, and love. It is our hope that we will do better at identifying sepsis early, unifying around the common cause of providing excellent sepsis care to prevent what happened to Clover and many other children, and the love that we all have that connects us and makes us strive to be the best we can be.

If your hospital or healthcare organization is interested in implementing the Clover Award, please reach out to me at allison.n.harrold@gmail.com for more information.

Lovingly,
Clover’s Mom, Allison

Learn About Our New Maternal Sepsis Initative!

Maternal Sepsis Campaign

The Rory Staunton Foundation is proud to announce the launch of a ground-breaking new initiative to combat maternal sepsis, a leading cause of pregnancy-related death in the United States.

The initiative is funded in part with Federal funds from the Department of Health and Human Services; Office of the Assistant Secretary for Preparedness Response Biomedical Advanced Research and Development Authority (BARDA) Division of Research, Innovation, and Ventures (DRIVe). BARDA DRIVe seeks to leverage public-private partnerships to address pressing health security challenges.

Why Maternal Sepsis?
We have made it our mission to end preventable deaths from sepsis–including for new and expectant mothers. No woman should die as a result of pregnancy and birth–and no baby should be left motherless.

The United States has the highest maternal mortality rate in the developed world, despite spending more than any other country on hospital-based maternity care.(1) It is the only developed country where mortality rates are rising rather than falling. Over the past two decades, the rate of pregnancy-related deaths in the US has doubled, with black women three times more likely to die of pregnancy-related issues than white women. (2) According to the CDC, the majority of these deaths are preventable. (3)

Maternal Sepsis is the third leading cause of pregnancy-related deaths in the United States and globally; nearly a quarter of all pregnancy-related deaths are sepsis related with studies showing that the rates of maternal sepsis are increasing. (4)

Learn more about the project on our Maternal Sepsis Campaign webpage

Rory Staunton Foundation & Sepsis Alliance File Joint Letter of Opposition to CDC’s Sepsis Policy Changes

Rory Staunton Foundation, Sepsis, Bloomberg

Last week we learned that the CDC has proposed changes to the way sepsis cases are coded. The issue is complex but essentially means that third-party payors would be empowered to deny payment for care relating to the early recognition and treatment of sepsis. As a result, hospitals and physicians would be disincentivized from providing critical and lifesaving care relating to the the early recognition and treatment of sepsis and patients could be saddled with the cost of care that should absolutely be covered. These development are deeply alarming and prompted us to file a joint letter of opposition with Sepsis Alliance asking the CDC to withdraw this harmful proposal. We will keep you updated on future developments.


RE: Opposition – CDC proposal to change ICD-10-CM

Dear Dr. Redfield and Dr. Madans:

On behalf of Sepsis Alliance and The Rory Staunton Foundation, we respectfully write in opposition to the Centers for Disease Control and Prevention’s (CDC) proposal to change ICD- 10-CM sepsis related codes. The proposal, released on October 10, 2019, would accept Sepsis–3 diagnostic criteria for ICD-10 coding. A move to Sepsis–3 diagnostic criteria would disincentivize physicians and hospitals from early recognition and treatment of sepsis and in doing so threaten the lives and limbs of the nearly 2 million patients presenting with sepsis at the hospital.

Mortality from sepsis increases with every hour that treatment is delayed [1]. As many as 80% of sepsis deaths could be prevented with rapid diagnosis and treatment [1]. By definition, the Sepsis- 3 criteria are mortality predictors and do not account for the nuances necessary to identify sepsis cases in their early stages when diagnoses and treatment are most effective. With these narrow criteria that do not account for the quick progression of sepsis, many sepsis cases will be missed or go untreated until the patient is critically ill.

Sepsis–3 criteria are not universally accepted. In fact, numerous important and influential medical societies have not endorsed the Sepsis-3 criteria, among them: American College of Chest Physicians, American College of Emergency Physicians, American College of Surgeons, American Medical Association, Society of Hospital Medicine, and many more. Not only are they not universally accepted by all medical societies, they are not widely accepted by daily practitioners, nor are they largely implemented in the hospital or care settings in which they work. In addition, the Sepsis-3 criteria conflict with the CMS sepsis criteria, which many hospitals must comply with.

Accepting the Sepsis- 3 criteria only benefits third party payors and places hospitals, physicians, and patients in a compromising position. If this proposed change were to take place, third party payors would be empowered to deny payment to hospitals for lifesaving sepsis treatment. This could potentially shift the financial burden of necessary medical treatment to the patient.

The Sepsis-3 criteria discourage physicians and hospitals from diagnosing and treating sepsis early, because they will no longer be paid for doing so. By intercepting sepsis early in its progression rather than later, many more dollars are saved than would be saved by withholding sepsis payments for patients until they are critically ill and treatment is less effective. Most importantly, early recognition and treatment of sepsis provides patients with the best chance for survival and improved overall outcomes. For these reasons, we strongly oppose the CDC proposed changes to ICD-10-CM sepsis related codes.

Respectfully,

Thomas Heymann Executive Director Sepsis Alliance

Ciaran & Orlaith Staunton Co-Founders
The Rory Staunton Foundation for Sepsis Prevention

Steven Q Simpson, MD Chief Medical Officer Sepsis Alliance

Martin Doerfler, MD Chief Medical Officer The Rory Staunton Foundation for Sepsis Prevention

1 http://www.ncbi.nlm.nih.gov/pubmed/16625125

Announcing Our New Maternal Sepsis Initiative!

Maternal Sepsis Campaign

We have BIG news. Last week, the Rory Staunton Foundation for Sepsis Prevention was awarded a major federal government contract, administered by the U.S. Department of Health and Human Service’s BARDA DRIVe program. The contract will partially fund a groundbreaking initiative to combat maternal sepsis, a leading cause of maternal death in the United States. The U.S. has the highest rate of maternal death in the developed world with black women three times more likely to die as a result of pregnancy than white women.

View our press release announcing the initiative here.
You can visit our new Maternal Sepsis Campaign webpage here.

What We’ll Be Doing:

Working with New York State Department of Health to analyze existing data around maternal sepsis and identify risk factors for women, including demographics and hospital procedures;

Developing a database of information on maternal sepsis that will become an unparalleled resource in informing public policy on the issue;

Improving delivery of care to new and expectant mothers;

Guiding education and awareness for patients and providers through the development of a suite of educational services including webinars and public service announcements;

Coordinating a multi-sector coalition of state and federal organizations to reduce maternal mortality rates;

Stopping maternal and neonatal sepsis in its tracks.

How You Can Help.

We are immensely proud of the project we have developed to end maternal and neonatal sepsis. We are taking a strong stand to ensure that no woman or infant dies as a result of pregnancy and childbirth, particularly in a country as wealthy and medically advanced as the United States. If you feel as we do, please consider contributing to this critical work. Your donation will go directly to our work in preventing the deaths of women and their infant children during pregnancy and after childbirth.

CONTRIBUTE TO OUR WORK

Thank you for your continued support. It is because of you that we will continue our battle to end sepsis.

A Message About Whoopi Goldberg, Vaccines, and Infectious Disease Week from Dr. Martin Doerfler

During International Infectious Disease Week, the Rory Staunton Foundations’ Medical Advisor, Dr. Martin Doerfler, Discusses Whoopi Goldberg’s Sepsis Survival and the Importance of Vaccinations.

Earlier this year, Whoopi Goldberg was hospitalized with an episode of Sepsis and Septic Shock caused by Pneumonia that brought her “close to leaving the earth”, in her words. Many people have heard of pneumonia, which is an infection of the airspaces of the lung. Many more have never heard of Sepsis, which is a potentially life-threatening condition caused by the body’s response to an infection, or Septic Shock, which is the most severe form of Sepsis when an individual’s Blood Pressure is dangerously low and oxygen does not get to the bodies tissues leading to organ injury and possibly death.

Infections like Pneumonia or Urinary Tract Infections (UTI) are the most common causes of Sepsis. Of the two, Sepsis from Pneumonia is more likely to lead to death, making Ms. Goldberg’s announcement all the more gratifying that her medical care was able to prevent such a terrible outcome. Though we do not know what less severe injuries she may have sustained and certainly wish her a speedy and complete recovery.

With the news of Whoopi Goldberg’s illness and recovery it is important to remind people that Pneumococcal Pneumonia, one of the most common causes of Pneumonia can be prevented by Vaccination. Pneumococcal vaccination is recommended by the CDC for children less than 2 and adults 65 and older as well as all individuals with certain medical conditions or who smoke cigarettes. It is also important to note, as we enter Flu Season that pneumonia can be a complication of the Flu which all individuals should consider receiving the Flu Vaccine as early in the season as practical.

Infections are common. Sepsis can result from nearly any significant infection. Know the signs:

– Rapid breathing and fast heartbeat
– Pale or mottled skin
– Confusion or sleepiness
– Fever and chills
– Feeling the sickest you’ve ever felt
– Extreme pain