Jack and Rory: Lives Intertwine

Jack McMorrow is a young 14-year old from Queens, New York, who began feeling ill in mid-April. A smattering of symptoms appeared including a rash on his hands and a stomach ache. His parents, John and Doris, put it down to overuse of hand sanitizer and eating too much of the “bad” stuff like cookies. This was right in the middle of the global pandemic. He became increasingly unwell. He could not open his mouth wide, and his parents consulted his pediatrician. His pediatrician could not complete a full examination via video camera interview but was sufficiently alarmed to prescribe steroids and an Epi Pen and advise his parents to bring Jack to a Pediatric Care Center for a COVID test and a Mono test. The Center was very reluctant to deal with Jack–they did not want to touch him, and it was only after speaking to Jack’s pediatrician that they performed the tests.

As they awaited Jack’s test results, his parents noted swollen lymph nodes. Using a BP machine which they had at home, they found his blood pressure was very low. He also had a high fever and rapid pulse–they decided to rush Jack to a major New York City hospital.

At the hospital, Jack’s parents insisted that the doctors rule out sepsis, knowing that he was showing the signs and symptoms. John told the Rory Staunton Foundation that they were met with resistance; the ER doctor’s shift was ending and they were given the discharge papers and told to take Jack’s blood pressure at home. The doctor told them Jack had no sign of a bacterial infection but that he did have signs of inflammatory problems. The McKorrows spoke with Jack’s pediatrician, who urged them to keep Jack at the hospital. When they went to wake Jack up they discovered his eyes were red, “like a bad case of red eye”.

Jack’s mother refused to let them release him. She told them that she was aware of the Patient’s BIll of Rights from the Rory Staunton Foundation, that she knew Jack wasn’t well and that he was showing the signs of sepsis. It was only then that they agreed to admit him.

Within six hours of his admission, Jack was critically ill and his dad was told there was an 80% chance of losing him. His tests came back positive for COVID-19. He was transferred to another hospital where they were actively treating COVID cases and where he was treated with great care.

John McMorrow believes that if he and his wife had not DEMANDED that the hospital keep Jack there, he would definitely have died. According to John, Rory’s death breaks their hearts but if it had not been for the Foundation, he would not have known to ask any questions or make demands.

In recent weeks, medical professionals have discovered there is a new threat to children, now called multisystem inflammatory syndrome. The syndrome can be characterized by severe inflammation of the heart, blood vessels, the gastrointestinal tract or other organs, believed to be caused by a reaction to the coronavirus. Doctors are still trying to understand the syndrome.

According to the NYC Department of Health, most children who suffer Multisystem Inflammatory Syndrome (MIS-C) will have a fever (temperature of 100.4 degrees F or 38.0 degrees C or greater) lasting several days, along with other symptoms including:
• Irritability or decreased activity
• Abdominal pain without another explanation
• Diarrhea
• Vomiting
• Rash
• Conjunctivitis (red or pink eyes)
• Poor feeding
• Red, cracked lips or red, bumpy tongue that looks like a strawberry
• Swollen hands and feet

Remember, advocate for your children and for yourself. You have rights!

Dear Mama To Be… Important Words this Maternal Sepsis Awareness Week

Dear Mama To Be,

Without even seeing you I know you look beautiful. I know you are glowing with excitement to meet the tiny human growing inside of you…probably even a bit nervous too (I was very nervous). If you are like me, I’m sure you have been reading all of the baby books and taking notes of all the baby checklists on Pinterest. By now you know to install the car seat ahead of time, pre-wash some (but not all) of the baby’s clothes, pack your own cute hospital robe and you probably have the perfect coming home outfit all packed in your hospital bag but there is one thing that almost all of those checklists and baby books leave out….

Educate yourself about maternal sepsis, the third leading cause of pregnancy-related deaths in the United States and globally.

(**Learn the signs of maternal sepsis HERE)

It sounds scary, right? It can be very scary; and in 2017 maternal sepsis, the body’s extreme reaction to an infection, nearly took my life.

I tell you this not to scare you, but to empower you with the knowledge that I wish just one of those hundreds of checklists or books I read in preparation of becoming a new mom had included. If I had known about maternal sepsis, maybe things might have been different.

On Saturday, September 2, 2017, I delivered a healthy baby boy and I was the happiest woman on earth.

On the day I was supposed to be discharged from the hospital I began to feel sick. I began to experience fever, chills, overall feeling of weakness, became short of breath, and felt like my heart was racing. I told my doctors all of my symptoms, but was quickly brushed off and was told that I was likely “just anxious about being a new mother.”

After doctors had given me enough Ibuprofen to make my fever go away for a while, they told me my new mom anxieties would likely go away when I got home and they sent me home with a prescription for anxiety medication. Not being a medical professional, or knowing what an elevated heart rate, fever, and elevated white blood cell count meant, I naively believed the doctors, that I would feel better once I got home.

Upon going home my symptoms did not improve. I continued to take the prescribed medications, including the anxiety medication prescribed by the doctor. My heart continued to race and I could not sleep or care for my newborn baby. Within about 36 hours of being released from the hospital, I couldn’t take it anymore and returned to the hospital.

After a short stay in triage, I was admitted into the hospital due to suspicions of an infection. Over the next 24 hours in Labor and Delivery my condition did not improve, I got progressively sicker and sicker as each hour passed. I went to the hospital to get better, instead, I laid there getting worse. The OBGYN doctors had no real answers for my family. I was finally taken to the ICU by a nurse from a different department who looked at my labs and knew something was extremely wrong. Had he not taken quick action, there is no doubt I would not have survived another 24 hours in the Labor and Delivery unit.

Over the next 2 weeks I would be treated for sepsis, endomitritis, septic shock, and all the other issues that go along with those, I.E.. kidney failure, shock liver, unstable blood pressure, pulmonary edema, blood clots, and the list goes on. I don’t remember much from my 9 days in the ICU and my earliest memories of waking up from my medically induced coma are filled with nothing but confusion. Where was my son? Did I even have a baby? Was that a dream? Whose hand did I trace the letters “C-R-U-Z” into when I had a tube in down my throat?

I would later learn that was my mother’s hand that I traced my son’s name in to and that was one of the very first things I did when I woke up. As I started to become more aware my family and doctors carefully tried to explain to me that I had developed an infection of an unknown source. That was the very first time that I had ever heard the word, “sepsis.” At the time, I had no idea what septic shock even meant. I was very confused. I had no idea that I had literally just escaped death. I had no idea that during my time in ICU the doctors told my family to call those closest to me to say their goodbyes. I had no idea that my husband had to think about how he was going to raise his son without a mother. I had no idea that my son came so close to growing up without his mama. I had no idea what I had survived had killed so many others.

I constantly find myself saying, “I wish I had known about sepsis.” That is why I am sharing my story with you, sweet mama to be. I want you to be aware that sometimes things do go wrong and doctors are only human. Sometimes they are wrong. But, if you and your family know the signs of sepsis you can advocate for your own health.

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. If you experience any of the signs related to sepsis, speak up! Don’t be afraid to stand up for yourself or a loved one to ask a doctor if symptoms could be related to sepsis.

I can’t wait for you to experience all of the wonderful joys of motherhood!

XOXO,

April

Need Help Talking to Kids About Coronavirus?

Coronavirus

With the rise of the coronavirus, many of us are unsure of how to talk with our children in a way that reassures them and helps them understand why washing hands is so very important to prevent illnesses.

Ouch! I Got a Cut! is a book for early readers, written by Orlaith and Kathleen Staunton. It addresses the issue of infection in a way that empowers kids to prevent infection through good hygiene. It’s a great way to start a conversation with young children and help give them a sense of control in an uncertain and confusing time. Ouch! I Got a Cut! is currently available on Amazon. All proceeds from sales of the book go directly to supporting the work of the Rory Staunton Foundation.

Stay safe.

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!

Sepsis And Nurses

school nurse, sepsis, nurse

School Nurses are the leaders on health in the school community, moreover are the leaders in health in our community at large; they are often the first to treat and the first to inform us about infections and other illnesses as they occur.

The National Association of School Nurses have adopted a Framework for 21 st century School Nursing Practice which provides structure and focus on the key principles and components of current day, evidence-based school nursing practices. The framework is aligned with the Whole School, Whole Community, Whole Child model that calls for a collaborative approach to learning and health. Central to the Framework is student-centered nursing care that occurs within the context of the students’ family and school community. On a daily basis nurses help students be healthy, safe and ready to learn.

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

Maternal Sepsis Campaign

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 Between the Two

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… Here’s a guide to help you differentiate between the two.

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 mortality

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