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Christian's Story

Written by Aimee Lybbert, Christian's mom

When our son Christian was born he appeared perfectly healthy. He passed all the standard newborn screening with flying colors. Every medical professional assured us he was fine. But in reality our son had a broken heart.


Our first thought after learning about Christian's heart defect two weeks after his birth was, why didn't the ultrasound show us that he had major congenital heart defects? We later learned that up to 25% of major heart defects are not detected during ultrasounds. 

We also later learned that although our hospital did a pulse oximetry test just after birth, they did not do another test when Christian was 24 hours old. It was not a hospital requirement.  When we asked our local hospital why the test wasn't done we were told that the cost of false positives were too high and they didn't want to scare parents and do unnecessary testing.  Congenital heart defects are the single most common birth defect.


Screening for Critical Congenital Heart Defects or pulse ox testing can detect seven different critical congenital defects.  Our son Christian has three of the seven critical congenital heart defects that it can detect. 

Today Christian is 16 months old. He's had two open chest heart surgeries and he will need at least two more. He will never be completely fixed or healed but with the help of his diligent medical specialists, he is thriving despite it all.  If he had received that second pulse ox test at 24 hours Christian would not have gone into full heart failure before his heart defects were detected. He would not have had to go into his first heart surgery with a weakened heart and an overtaxed body. 

I was honored to provide written testimony to the Washington State Board of Health in support of requiring pulse oximetry testing for all newborns, so that other families don’t have to experience what we went through. We're lucky that Christian made it, but not all Washington babies are as lucky.

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Have a Heart Healthy Summer

Guest Blogger: Kami Sutton, Grassroots Advocacy Coordinator

Happy Summer, You’re the Cure Advocates! As the temperatures are rising and we are all preparing for the fun activities of summertime, I thought I would share with you my favorite low sodium summertime recipe! As a congenital heart defect survivor and someone who is in a constant battle against Congestive Heart Failure, I have learned how to eat a healthy low sodium diet.

Even for healthy hearts it is important to eat a well-balanced diet to prevent heart disease and that includes a diet low in sodium and processed foods. Choose and prepare foods with little or no salt. To lower blood pressure, aim to eat no more than 2,400 milligrams of sodium per day. Reducing daily intake to 1,500 mg is desirable because it can lower blood pressure even further.

With that in mind I present to you a delicious low sodium recipe to take to your next summer picnic or BBQ!

Black Bean Salad (or Salsa)

6 servings

 

About $0.84 per serving

 

1 15.5-ounce can no-salt-added or low-sodium black beans, drained

1 15-ounce can no-salt added or low-sodium kernel corn, drained or ¾ cup frozen corn, thawed

1 medium red bell pepper or 1 tomato diced

1/2 cup red onion, diced

1 teaspoon minced garlic from jar

2 tablespoon chopped cilantro

2 tablespoons cider vinegar

3 teaspoons extra virgin olive oil

Juice of 1 lime

 

Toss all together, chill at least one hour.

TIP: Serve this as a side salad to a meal or warm in microwave and use as a filling for tacos!

For nutrition facts and links to more healthy recipes, visit: http://www.heart.org/HEARTORG/GettingHealthy/NutritionCenter/HealthyCooking/Black-Bean-Salad-or-Salsa_UCM_429539_Article.jsp

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Teaching Gardens = Learning Laboratories for Kids

Studies show that when kids grow their own fruits and vegetables, they’re more likely to eat them. That’s the idea behind the American Heart Association Teaching Gardens.  While 1/3 of American children are classified as overweight or obese, AHA Teaching Gardens is fighting this unhealthy trend by giving children access to healthy fruits and vegetables and instilling a life time appreciation for healthy foods.

Aimed at first through fifth graders, we teach children how to plant seeds, nurture growing plants, harvest produce and ultimately understand the value of good eating habits. Garden-themed lessons teach nutrition, math, science and other subjects all while having fun in the fresh air and working with your hands.

Over 270 gardens are currently in use nationwide reaching and teaching thousands of students, with more gardens being added every day.  You can find an American Heart Association Teaching Garden in your area here or email teachinggardens@heart.org to find how you can get involved.

               

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Our Next Step to Ensure Statewide Heart Defect Screening in Washington

As we’ve shared with you before, a movement is building across the nation to screen every newborn for critical congenital heart defects (CCHD) using pulse oximetry. CCHDs are the number one birth defect in newborns affecting roughly 1 in 100 babies. Wider use of pulse oximetry screening, a quick, painless, inexpensive test, could help identify more than 90 percent of congential heart defects.

More than 30 states have now established a statewide requirement to ensure every baby is screened. We are working with partners at the March of Dimes to do just that here in Washington. Together on Wednesday June 11th we asked the State Board of Health to add CCHD to our state’s newborn screening panel. Newborns are already screened for other diseases and deficiencies; the American Heart Association believes congenital heart defects – the most common cause of infant death – should be included too.

Families with children born with CCHD’s shared their stories with decision makers at the State Board of Health on the 11th. We hope to be able to announce soon that Washington will join the other 30 plus states that screen newborns for CCHD. Stay tuned for an update as soon as a decision is made.

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Washington Do You Know How To Do Hands-Only CPR?

Last week was National CPR Awareness Week and I wanted to ask for your help.

Too few Washingtonians know how simple it is to learn and perform Hands-Only CPR—but with your help, we can change that.

Would you share this video PSA about Hands-Only CPR on Facebook? Educating your friends and family members is one of the best ways to spread the word.

SHARE THIS! Copy and paste this into your Facebook status:

WOULD YOU KNOW WHAT TO DO? Last week was National CPR Awareness Week and every person in Washington should know Hands-Only CPR. Step 1: Call 9-1-1. Step 2: Push hard and fast in the center of the chest until help arrives. You could save the life of a loved one or a stranger. Watch this video and please share. #HandsOnlyCPR - http://youtu.be/n5hP4DIBCEE

Unfortunately, national statistics show 90% of people that suffer cardiac arrest outside of a hospital don’t survive, and most people don’t know what to do in those emergency situations. But every person in Washington can learn Hands-Only CPR in a few short minutes, and be equipped to save the life of a loved one or a stranger.

That’s why we worked so hard to make Hands-Only CPR a requirement for all high school students in Washington. We recently celebrated the first academic year of the CPR being part of Health class requirement taking affect. This means an estimated 82,000 thousand new lifesavers are in our communities and that number will continue to grow every year.

If you’re not a Facebook user, you can still help! Just send out the message in an email to your friends, family, neighbors and co-workers.

Thank you so much for your help.

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Together We Can Ensure Every Baby Gets a Healthy Start

A movement is building across the nation – a movement to screen every newborn for critical congenital heart defects (CCHD) using pulse oximetry. CCHDs are the number one birth defect in newborns affecting roughly 1 in 100 babies. CCHD is a life-threatening condition that often requires surgery or other medical intervention within the first years of life. Failure to detect CCHD or the late detection of CCHD may lead to serious health problems or death. New research suggests wider use of pulse oximetry screening, a quick, painless, inexpensive test, could help identify more than 90 percent of heart defects. More than 30 states have now established a statewide requirement to ensure every baby is screened. Why wouldn’t we screen every baby?                                        

Many Washington hospitals have begun voluntary screening which is encouraging, but voluntary screening today doesn’t guarantee screening tomorrow. We are working with stakeholders and decision-makers to explore how to make a statewide requirement for CCHD screening a reality here in our state. The most powerful way to help decision-makers understand the importance of universal CCHD screening is to share real stories of real families living with CCHD. If you have a personal connection to CCHD and are willing to share your story, please email me.

Together we can ensure every baby gets a healthy start.

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When My Mother Had A Stroke

Guest Blogger: Namya Malik; 15 year old daughter of a stroke survivor

Two years ago, I woke up in the morning to my dad yelling at my brother and me that there was something wrong with my mother. When I rushed out of bed, I found my dad trying to help my mother walk down the stairs. My mom’s face was droopy, her speech was slurred, and her movements were uncoordinated – all the warning signs of a stroke that no one in my family recognized at the time. My dad took her to the hospital, and my brother and I waited at home. A few hours later, my dad called and told us that she had suffered a stroke. The doctors discovered that she had a congenital heart defect called atrial septal defect. This defect enabled direct blood flow between two compartments of her heart which caused a blood clot and prompted the stroke.

My mother spent three weeks in rehabilitation and has had several surgeries to repair her heart defect, but her stroke has had a lasting impact on her life. She lives with a condition called atrial fibrillation which puts her at great risk for another stroke. Her right hand is still weak, and she writes very slowly. Her speech is impaired also, and she often slurs and mispronounces words. Yet, she has shown remarkable courage, made significant progress, and can perform daily activities without help.

When my mother suffered the stroke, I barely knew what a stroke was, and I was oblivious to its severity and consequences. Seeing my mother live with her disabilities has motivated me to raise awareness about stroke. By educating other people about heart health and stroke, I hope to prepare them to recognize the symptoms of a stroke so that they can help in an emergency. For certain types of strokes, doctors can minimize damage to the brain tissue if a patient reaches the medical facility within four hours, so recognizing the symptoms of stroke is crucial. I have recently started working with the American Heart Association/American Stroke Association to help raise awareness about heart disease and strokes in my community. I plan to start a club in my school that promotes heart health and encourages students to lead healthy lives, and I intend to talk about and demonstrate CPR in classrooms.

I would like to invite everyone reading this to get involved and help raise awareness about stroke. Research shows that stroke is the number one preventable cause of disability in the United States, so increasing awareness is pivotal if we want to avoid the debilitating consequences of strokes. Whether you want to organize a large fundraising event to support stroke research or simply discuss ways to lead healthy lives with your friends, your actions can help reduce the prevalence of strokes. Your efforts could save a life or prevent a person from living with a disability.

Think F.A.S.T. and get to know the warning signs of stroke: StrokeAssociation.org/warningsigns.

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Advocate Spotlight - Karen Dionne

Karen Dionne, Washington

At age 37, I envisioned my whole life ahead of me as I was planning my wedding to Michael, the man of my dreams.  I was successful at my job as a sales representative at a golf resort.  I was physically active, for fun I played co-ed softball, golf, and tennis.  My life quickly changed in an instant.  One quiet morning, I would leave my old life as I knew it behind and begin my life over struggling to survive as a stroke survivor.

Four months prior to my wedding, I had a hemorrhagic stroke causing paralysis on my left side. I had no known stroke risk factors. Blood pressure was normal, healthy cholesterol, didn’t do drugs, not on birth control pills, and was not overweight. 

On Friday morning March 2, 2007 while making breakfast with my fiancé Michael, I told him that I was feeling dizzy, light headed and I had a severe headache. It felt as if I could pass out.  Warning sign #1.    

As I sat on the couch, I started to feel immediate fatigue. My head was just not right. It started to hurt more.  Warning sign #2.  

I got up and started to walk again. However, this time I stop and just stood there.  I looked down at my feet in disbelief.  I described to Michael that I was looking down at my left foot but I could not feel it. Warning sign #3. 

The sensation quickly traveled up the left side of my body. I could not feel it. It was like it went to sleep without the pins and needles feeling.  Something was terribly wrong.  “Help me!” I exclaimed. 

Michael started putting all the pieces of the puzzle together. He looked at me and asked me to smile. He could see the left side of my facial muscles were not equal to my right side.  Warning sign #4.  

He said to me, “Karen, everything you’re telling me says you’re having a stroke!” This all took less than 5 minutes.

Michael SAVED MY LIFE that day by recognizing that I was having a stroke.  There was no doubt in his mind.  He wasted no time getting me to the emergency room.  A CT Scan revealed I was bleeding in my brain. I was having a hemorrhagic stroke. 

The stroke took many things from me including my lower left quadrant vision. It left me without feeling on my entire left side including in my left hand, I had to learn to walk again and I still have a small limp. With hard work, determination, and complete love and support from my husband Michael, I was able to walk down the aisle four months later on our wedding day. 

I later asked Michael how he knew I was having a stroke. He replied that he read it somewhere but he doesn’t remember where. Only that somewhere he remembered that lifesaving bit of information that he stored in his memory. I say that because everything we do to raise awareness about heart disease and stroke adds up. Even if it’s one person we touch, that one person could save a life someday.  And it could be YOUR life.  Or YOU could save someone you love.

Social media has been a great tool throughout my recovery efforts. During my journey on the road to recovery, I founded a support group for young adult stroke survivors called facebook.com/Reclaiming Ourselves.  Nearly a thousand of young adult stroke survivors from around the world encourage each other online with our goals and successes.  We are also available on Twitter @Stroke_Survior, and Pintrest. 

I volunteer as a Go Red For Women Ambassador with the American Heart Association. I do public speaking throughout my community educating others about the warning signs of heart disease and stroke and controllable risk factors in order to save lives.  As a Go Red For Women Ambassador is not just about heart, it's about stroke too.  Our goal as Ambassadors is to raise awareness about heart disease and stroke in order to reduce deaths from these diseases.  And the focus is not just about Heart month in February, it's about every month, for every woman, for every life.  

Being a voice for the millions of stroke survivors and their families is very important to me. That’s why I’m a You’re The Cure advocate. Recently, I met with our Washington state Governor and other elected officials to discuss tobacco prevention, childhood obesity, safe routes to schools and CPR in schools in order to save lives.  It’s easy to be an advocate and the American Heart Association makes it easy. 

I was honored to be asked to be on the Board of Directors in the South Sound.  It’s another way to give back to my community and support an organization that gives so much to help so many. 

Do I still work on my recovery?  Every day!! I stay very active with my gym membership.  My goal is to work out 4-5 times a week and do physical events such as 5K’s, 10K’s or even half marathons. This year was the second time I completed The Big Climb in Seattle up Columbia Tower (69 flights and 1,311 steps).  I believe there is no finish line.  I’m always looking for ‘what’s next’ and challenge others to join me. 

How do you recognize a stroke?  Remember F.A.S.T. 

F. Face

A. Arms

S. Speech

T. Time call 9-1-1 immediately

Please, make it your mission to educate yourself on the warning signs of stroke so you can be there for the ones you love. And make it your mission to educate the ones you love so they can be there for you. 

Karen Dionne, Stroke Survivor

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Take Control of Your Health

Did you know high blood pressure has also been called the “silent killer”? That’s because its symptoms are not always obvious, making the need for regular check-ups important.  As we recognize High Blood Pressure Awareness Month, here are the facts:

• High blood pressure (aka: hypertension) is one of the major risk factors for heart disease.

• It’s the leading risk factor of women’s deaths in the U.S., and the second leading risk factor for death for men.

• One-third of American adults have high blood pressure. And 90 percent of American adults are expected to develop high blood pressure over their lifetimes.

• More than 40 percent of non-Hispanic black adults have high blood pressure. Not only is high blood pressure more prevalent in blacks than whites, but it also develops earlier in life.
 
• Despite popular belief, teens, children and even babies can have high blood pressure. As with adults, early diagnosis and treatment can reduce or prevent the harmful consequences of this disease.

Now that you know the facts, what can you do to take control? The answer is a “lifestyle prescription” that can prevent and manage high blood pressure. A healthy lifestyle includes exercise, stress management, and eating a healthy diet, especially by reducing the sodium you eat. To learn more about taking control of you blood pressure, be sure to visit our online toolkit!

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Looking Back at the Washington 2014 Legislative Session

Guest Blogger: Lindsay Hovind, Washington Government Relations Director

The Washington State Legislature adjourned March 13th. Given that 2014 was the second year of the biennium, the Legislature was committed to limiting the scope of the supplemental budget. Knowing that, we are very pleased with some of the investments legislators made:

  • For the first time in four years the state invested $1 million in the Tobacco Prevention and Control Program. While we had hoped for a larger investment, we are glad to see this important first step toward rebuilding this life-saving program.
  • The Legislature also chose to make the first-ever state investment in obesity prevention - $350,000 to fund the Governor’s Healthiest Next Generation initiative. This initiative will provide for coordination across the Department of Health, Department of Early Learning and the Office of the Superintendent of Public Instruction to support and develop innovative approaches to fight childhood obesity in our state.

This past session we also supported budget requests to establish grant programs to fund school kitchen renovations and water bottle filling stations in schools. These investments would have been made through funds from the capital budget, however, the Legislature chose not to do a supplemental capital budget this year. Similarly, the Legislature did not arrive at consensus on a transportation revenue package, part of which we had hoped would fund Safe Routes to Schools.

Thank you all for your support throughout the 2014 legislative session. We made some important progress toward in improving the health of our state and we look forward continuing our work throughout the interim and in to next session.

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