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By Michelle Ballasiotes. Michelle is a pediatric stroke survivor. She can be reached through her Facebook group, Youth Advocates for Pediatric Stroke, as well as the the KISS Pediatric Stroke Facebook group.

There seems to be a lot of resources and information for adults who suffer strokes, but what about children? Most people don’t realize that a stroke can also happen to children, teens, babies and even the unborn, leaving lifelong disabilities.

I know this first hand, having suffered a stroke before I was born. As a result, I am missing a portion of the left side of my brain that leaves me with hydrocephalus, right hemiplegia, and short term memory deficits. I’m considered a “lucky” survivor because I started weekly occupational and physical therapy at just six months and continued for 10 years in order to reach my full potential. And unlike many global survivors, I benefitted from access to high quality health care and good health insurance.

Stroke in babies, children and adolescents is often misdiagnosed or not diagnosed due to the lack of awareness that the condition can happen in this population. Yet every year, stroke occurs in five of 100,000 children. Of those who survive, more than 60 percent suffer permanent neurologic deficits.

Further, when a child suffers a stroke, the family may feel alone and vulnerable because supportive community resources and medical treatments are not universally available. This is a global challenge even in high-income countries like the United States.

My family saw this first-hand and took steps to support me and others like me. My mother started a local support group. Guest speakers and doctors came to the quarterly meetings, and we had annual community picnics. Despite physical limitations, kids would storm the playground and meet other children just like themselves. I would often give words of encouragement and answer questions from parents of younger stroke survivors. I cannot emphasize enough the importance of a caring community for both the parents and children.

After six years locally, there was enough interest that my mom created a global organization, the International Alliance for Pediatric Stroke (IAPS). It partners with AHA and the University of North Carolina to produce resources and publications for families, patients and healthcare providers. The website is very comprehensive and has a vast number of publications, resources, current news, research, a list of organizations worldwide and inspiration. Information and inspiration are so important for survivors and their families.

Recently, I learned about a program by a mom with a pediatric stroke survivor. Her organization, Pediatric Stroke Warriors, assembles “Brave Boxes” that are given to children before they go into surgery or have a major medical appointment. The box contains toys and other fun goodies based upon the child’s age and is designed with the dual purpose of distracting the child and easing parents’ nervousness to see a happy child. Parents aren’t left out, either. They receive “Warrior Bags,” with educational tools from IAPS and lists of local and national resources so they can see there is a caring community surrounding them.

I just started my freshman year of college and hope to give back by starting a program with hospitals near my university that would create communities of care for pediatric stroke survivors. Ideally, it will be a peer-led mentoring program for other children affected by stroke.

Pediatric stroke survivors like me will need a lifetime of ongoing care, treatment and support. The same is true for everyone suffering from a noncommunicable disease. If you’re wondering where to start, try the American Heart Association’s Patient Support Network, the American Stroke Association or some of the other resources mentioned in this post. Together we can make a difference.

This blog was written by Michael Hulley of the American Heart Association.

It’s been two years since an artery spasm sent me to the emergency department at Baylor Scott & White Medical Center in Dallas. I’d been on the road for 16 days and was sitting in a meeting at the office, which just happens to be the American Heart Association. We’re closing up a discussion about ACLS when it started. Tunnel vision. Tightness in the chest. Pain. Clamminess. Thirty minutes later I’m  en route to the hospital, accompanied by my colleagues, ECC’s senior leadership.

The story ended well, but it’s illustrative of the need for AHA’s global mission. Baylor McKinney had excellent staff, new rooms and the most current equipment. A colleague knew to hand me an aspirin. I got admitted very quickly once at the hospital and was seen by highly trained healthcare providers.

But in my position within AHA’s International division affords me a look on the other side of the glass. What would have

happened if this occurred in a taxi in China? Or while in rural Central Africa? I had no idea what was going on – and I’m probably more educated in heart conditions than most. Would I have made it to a hospital? Would the treatment follow the AHA’s Guidelines Update for CPR and ECC or Get With the Guidelines program?

In China, where there is a shortage of doctors and nurses, average citizens gather in a room where medical professionals can examine up to eight people at a time. Hallways are wide to accommodate those who are waiting for treatment. Survival rates from out-of-hospital cardiac arrests are low – approximately one percent.

That’s why what the training and education that AHA is conducting in cooperation with the Chinese government and in 80 other countries is so important. It will save millions of people in that nation over the next decade.

It’s also a significant reason for our support of the World Heart Federation, the global cardiovascular advocacy organization, in its goal to reduce premature deaths around the world from cardiovascular disease (CVD) by 25 percent by 2025.

World Heart Day, September 29, 2016, recognizes that every year, 17.3 million lives are lost to heart disease and stroke. In fact, cardiovascular disease is the leading killer around the world. It’s our mission to change that and give people a fighting chance at survival. One way to do this is to control the four main risk factors of CVD: tobacco use, unhealthy diet, physical inactivity and harmful use of alcohol.

After my scare I made deliberate lifestyle changes to power my life. I work out, even on the road. I changed my diet. I lost 16 pounds when I started taking my health seriously.

It’s time we reverse the trends of premature deaths from CVD and inequalities in low- and middle-income countries, which now account for 80 percent of CVD deaths.

Where you live shouldn’t determine if you live.

In case you missed it in last week’s American Heart Association News: a great CPR story illustrating the chain of survival in one of New York City’s busiest commuter and tourist locations.

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Three years before musician and actress Ilisa Juried appeared on The CW’s reality show Pussycat Dolls Present: Girlicious, her heart stopped in New York City’s Grand Central Station.

The then-18-year-old was sightseeing with her mom when they saw a group of hip-hop dancers performing at the train station, and Juried asked to join in. The lead dancer pulled her in, and a few moments later, Juried collapsed.

Deb Scholten, a nurse vacationing from Michigan, ran to Juried’s side and started CPR. When paramedics arrived 30 minutes later, they used an automated external defibrillator, or AED, to shock Juried’s heart back into a normal rhythm.

The Florida native spent six weeks in a New York City hospital, where doctors ultimately diagnosed her with long QT syndrome, a problem with the heart’s electrical system that can cause a fast, chaotic heart rhythm. The Juried family believes the condition, which is often inherited, may explain her father’s death from cardiac arrest at age 45.

While in the hospital, doctors implanted a cardioverter defibrillator, known as an ICD, to shock her heart back to its normal beat should a life-threatening rhythm ever occur.

“My [ICD] scar is my star,” said Juried, who is now 29 and lives in Los Angeles. “Every day I’m reminded of my strength, simply by what I’ve had to endure with my condition.”

The device has shocked her heart three times.

“I always faint right before it happens, so I don’t remember any of it,” she said.

Following her recovery, Juried scaled back on dance, focusing instead on her love for music and acting. During the past decade, she has appeared in dozens of commercials and recently released a jazz album titled Making History.

 

She takes medication to help manage her irregular heartbeat and is careful when doing any exercise. She also volunteers for the American Heart Association, sharing her story at local events and raising awareness about CPR.

“CPR is the only thing that saved me from major brain damage and kept me alive,” said Juried, who keeps in touch with Scholten through Facebook.

About 40 people each hour have a cardiac arrest while not in a hospital, and nine of 10 do not survive, according to AHA statistics. Yet receiving bystander CPR can double or even triple the victim’s chances of survival.

Juried first learned CPR as a teenager when she was a babysitter. Last October, she underwent training again.

“Everyone should learn CPR,” she said. “You can truly save someone’s life by learning simple techniques.”

Photos courtesy of Ilisa Juried

Recently, ECC produced a new Hands-Only CPR training video. In it, two siblings grapple with the suggestions of their lovingly overbearing mother. But when practicing Hands-Only CPR, it’s the kids who end up teaching the mom. The story behind the actors is a fascinating one.

https://www.youtube.com/watch?v=3tpWLURi7PI

When taking on roles, actors often ask themselves, “What’s my motivation?” For those who made “Mama Knows Best,” the answer was simple: to save lives.

 

Roberto Morean plays the son, Tomas. In his own family, two grandparents have high blood pressure and several family members have high cholesterol. Morean became dedicated to promoting health when he was diagnosed with Hodgkin lymphoma in 2014. Some chemotherapy drugs, he learned, can damage the heart. “During chemo, they put a lot of emphasis on my heart to make sure it stayed strong,” said the 21-year-old. “It puts a lot into perspective.”

Morean’s cancer is now in remission. It helped him realize at a younger age than most that few things are as important as health. “I’ve been a big advocate for healthy lifestyles and raising money for organizations,” he said. “Doing something for the American Heart Association is just another way to be an advocate.”

During rehearsals, Morean for the first time learned how to perform CPR. “We spent lots of time filming me giving the dummy CPR,” he said. “And I thought, ‘This is crazy,’ because this is what a lot of people will watch to learn how to do CPR and save lives themselves.”

The opportunity to teach people about CPR meant a lot to Morean, and he hopes people who see it can make a difference. “Using art forms for purposes like this is important,” he said. “It helps people remember for when they need it most.”

The father of the video’s director, Fernando Vallejo, died suddenly from a heart attack when Vallejo was 32. “I guess we all take our heartbeats for granted,” he said. “We breathe, we walk, we live — until something goes tragically wrong.” For Vallejo, raising awareness about heart disease and CPR isn’t something he takes lightly. “It’s a matter of life and death,” he said.

An 18-year-old Danielle DeVito, a paramedic and AHA volunteer, was inspired to join this profession when she was on a city bus going to visit a friend and witnessed an accident. Two female responders got out of an ambulance to help the person, who almost died. It was the first time she had observed a professional responder in action – and also the first time seeing a person’s life saved right before her eyes.

Danielle realized right then and there that EMS was what she wanted to do for the rest of her life. She was intrigued by the thought of helping people in emergency situations and being that link between someone being unsure of what to do, calling for assistance and looking for someone with training to show up. She says, “You may not have all of the answers, but you definitely have the tools from training to assist the community.”

While Danielle was working, she observed young and older people suffering strokes and cardiac arrest. She started to realize that few people seemed to recognize the signs of a stroke and even less started CPR before a first responder showed up. Danielle wondered if there was something that she could do to encourage more people to take action.

She searched for ways to help people before they call 9-1-1, which is what brought her to volunteer with AHA on the program Power to End Stroke, an education and awareness campaign that seeks to impact the high

incidence of stroke within communities. She then expanded her volunteer work to encourage greater use of Hands-Only CPR, most recently launching a Hands-Only CPR kiosk at O’Hare Airport in Chicago.

Danielle thinks learning CPR is important for the simple fact that a person never know when someone standing or sitting next to them will go into cardiac arrest. Danielle appreciates the pass-along effect of her education efforts, saying, “If I am able to teach one person what to do, that person will go home and help their families.”

As part of their jobs, EMS professionals are required to keep up their skills and stay current with best practices and guidelines. Danielle likens the body to a computer in that it is always changing. “Every few weeks,” she says, “it is time to reboot and update.” Those in her field are typically the first professionals on the scene with knowledge on how to treat a victim. “We are held to a very high standard,” she states, “Our reports are filed with hospitals and even with the Centers for Disease Control & Prevention. So we need to be at the top of our game.”

Danielle is inspired by her daughter, who used to sit quietly in a chair while Danielle taught CPR courses. She remembers when her daughter was four years old, she suddenly got up and started doing CPR on an infant manikin. Her daughter, now 13 years old, was recently told to do 15 compressions as part of CPR education in her health class. Her daughter corrected the teacher and said, “You need to do 30 compressions to the song ‘Stayin’ Alive.”

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June 15 – 21 is designated as EMS Week in recognition of those who put their lives on the line in order to save lives. During this week – and every week during the year – we salute our EMS providers for all of the work that they do to make our communities a great place to live, work and play.

“Nurses Week [May 6 –  May 12, 2016] is important because it puts the spotlight on the people who really take care of you at the hospital,” said Jo Haag, MSN, RN, Resuscitation Learning Director for the American Heart Association. “It raises awareness of the wide variety that nurses do, and they do it all. This is another chance to educate the public and future nurses of all the things you can do when you are a nurse.”

Although this wasn’t a childhood career aspirations, one of Jo’s very first toys – the Nurse Barbie Careers Doll – proved prescient. What drew Jo to the profession is a little bit of a blur, but she really loved helping people and the variety of doing different things. As she grew in her career, she felt a sense of accomplishment that drove her to continue. Jo has worked in many different departments, from Labor and Delivery to ER to ICU, and even as a flight nurse. “I’ve been a nurse for so long it is part of who I am.”

Jo grew up and worked in Illinois both a hospital nurse and American Heart Association volunteer. She was also an adjunct faculty member at three different colleges. She loved the feeling of explaining academic concepts to students and seeing the “light bulb of knowledge” go off.

Jo had hospital colleagues who said she would be a great CPR instructor. She gave it a whirl, enjoyed it and got involved at wider level. She still teaches CPR classes at her church and in the community.

Jo has been a in her role as a Resuscitation Learning Director at the American Heart Association for a little over a year. She still maintains her skills as a nurse: “Keeping my license as a nurse gives me credibility in my position at AHA since primarily the audience I work with is the medical profession.” A big chunk of Jo’s role is also interacting with international training network, working with health professionals in many countries to establish AHA training.

Jo emphasizes how important it is for everyone to learn CPR because CPR can and does save lives. “We are getting more and more data on that. Even if all you get out of a class is call 9-1-1, it’s better than nothing. CPR empowers people to take action.”

 

During Nurses Week, we salute Jo and all of her colleagues in the nursing profession.

You are everyday superheroes!

In my role at the American Heart Association, I travel on a regular basis and spend lots of time in airports waiting to catch flights. It’s amazing the amount of foot traffic that airports see on a daily basis. Approximately 176,000 passengers pass through my hometown airport, Dallas-Ft. Worth, every day.

Thinking about the number of people who sit for long periods of time at airports played a role in addressing the AHA’s ambitious goals for training people in the lifesaving skill of CPR.

Here’s the hard truth: 90 percent of people who suffer out-of-hospital cardiac arrests die before medical responders arrive on the scene. This is not only true internationally, but particularly in the United States. When the AHA set its 2020 goal to double survival from cardiac arrest, the former EMT in me became fixated on finding a solution to improve survival within those first few minutes of cardiac arrest.

The answer is simple–everyone needs to know CPR and anyone can learn this lifesaving skill. This tactical solution proved more challenging until we took inspiration from a social experiment conducted in Sweden. Social scientists there took a look at a fun way to encourage people to use the stairs instead of an escalator. After hearing about this experiment, I started thinking whether we could take that same concept and create something fun and engaging in a high-traffic location that would demystify CPR.

Fast forward four years. We installed our first Hands-Only CPR kiosk at DFW Airport in 2013. Each kiosk offers a touch screen that shows a brief video introducing the two steps of Hands-Only CPR. Users can then take a practice session followed by a 30-second CPR test. The kiosk provides feedback about the depth and rate of compressions and proper hand placement.

To date, nearly 25,000 people have learned Hands-Only CPR from this kiosk.

We’re grateful that Anthem Foundation sees the lifesaving potential in these kiosks. Thanks to their generous support, we are proud to announce the installation of seven new kiosks across the country in high-traffic locations:

Five Airports

• Chicago O’Hare International
• Indianapolis International
• Las Vegas’ McCarran International
• Hartsfield-Jackson Atlanta International
• Baltimore-Washington International Thurgood Marshall

Two Office Buildings

• Global Center for Health Innovation in Cleveland, Ohio
• Anthem’s office in Washington D.C.

As you wait for your next flight, you could learn how to save a life in about five minutes by visiting one of these Hands-Only CPR kiosks. We know of at least one life saved as a result of someone learning CPR on the kiosk – a story that was recently profiled on the syndicated talk show The Doctors.

Matt Lickenbrock, a University of Dayton student who saved the life of a fellow student struck by lightning by performing Hands-Only CPR, used the kiosk as a boredom buster during a three-hour layover at DFW Airport. He sums the experience up neatly: “I never thought I’d be in the situation to use it. No one ever does. But I knew I was doing what I was trained to do.”

To learn more about these new kiosks, visit our newsroom story here.

To learn more about CPR, please visit heart.org/cpr.

Throughout the month of February, our organization works diligently to remind Americans to focus on their hearts and encourage them to get their families, friends and communities involved. We’re also getting the world involved through collaborative efforts with many countries, primarily within Europe, South America, Africa, and most recently, China.

How did February become American Heart Month?

Valentine’s Day and the heart go hand-in-hand. The first American Heart Month, which took place in February 1964, was proclaimed by President Lyndon B. Johnson via Proclamation 3566 on December 30, 1963. The Congress, by joint resolution on that date, has made this request of the president annually.

Back then, more than half the deaths in the U.S. were caused by cardiovascular disease. While fatalities have decreased since the first American Heart Month in 1964, the most recent numbers are still grim. Perhaps most telling is that cardiovascular diseases claim more lives than all forms of cancer combined.

How can you get involved in better heart health?

There are many things we can do in our daily lives to help spread the message, and it’s particularly important to me because many of the women in my family have various forms of heart disease.

Consider these tips – and while we still have about 10 days left of American Heart Month, I’d encourage you to keep up these habits year-round.

1. Learn CPR and/or refresh your CPR skills. Start by learning Hands-Only CPR, but then consider taking one of our courses for a deeper dive into the subject matter. Search for a course offering near you on our Find A Course page.

2. Get at least 150 minutes of moderate exercise or 75 minutes of vigorous activity each week – or a combination of both. Thirty minutes a day, five times a week is an easy goal to remember. You will also experience benefits even if you divide your time into two or three segments of 10 to 15 minutes per day.

3. When you think meals, think healthy! When cooking at home, think heart-healthy food options all month long: MORE vegetables, fruits, legumes, nuts, seeds and whole grains and LESS sodium, saturated fat, and added sugar.  Simple Cooking with Heart recipes make it easy – and tasty.

4. Check out the My Life Check® page to learn your heart score. My Life Check is a simple, seven step list designed by the AHA to deliver on the hope we all have – to live a long, productive healthy life.

5. Learn the signs of a stroke: Face drooping, arm weakness, and speech difficulty. If you see these, it’s time to call 9-1-1. The pneumonic FAST will help you remember the signs and action step.

Improving heart and brain health is our mission so that you can experience more of life’s precious moments. And until there’s a world free of heart disease and stroke, we’ll be here, working to make a healthier, longer life possible for everyone.

This month, please join me in watching and sharing our Life is Why video (above) on your social media accounts. Together, we can build a culture of health where making the healthy choice is the easy choice.  Why?  Because Life is Why.

Last year I was approached by an Instructor who suggested that he, his colleagues and American Heart Association might benefit from a social sharing and networking site (he called it a mash-up of LinkedIn and Facebook). Instructors are the public face of the AHA, and together we should be able to share our stories and have meaningful conversation. A social site seemed like a natural next step in the process.

Today I am proud to announce the launch of that site — our Instructor Community — created exclusively for the AHA Training Network. We have been piloting it for several months now with about 150 instructors, and we are thrilled to invite all of our AHA Instructors and Training Center Coordinators to join.

Features of the Instructor Community include:

• Online discussion forums to share ideas, discuss training courses, ask questions about the updated guidelines and more
• The Instructor Community blog where you can share your experience and read those of others
• The opportunity to connect with other Instructors in your area and around the country
• Downloadable resources to help you as an Instructor
• Provide feedback, suggestions, etc. to AHA CPR & ECC

Starting today, when you log in to the Instructor Network, you will see this widget (below) on your Dashboard. It will lead you directly into the Community. With our integrated “single sign-on” feature, you will not be required to create a new user account / password in the Community. We want to make it as seamless as possible to toggle back and forth between the Network and Community, and we hope this function makes it easier for you to come and go to the Community as you please.

Finally, I want to reiterate that this Community was built exclusively for you, our passionate and dedicated Instructors. This forum is only as good as the engaging, timely, and ongoing discussion that continues to take place. Please let us know how we can better serve you with your ideas to keep the site fresh and useful by reaching out to us at ahaic@heart.org. I personally thank you for your participation and for helping our Instructor Community to grow and thrive!