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Spencer's Story - looks can be deceiving

Written by Amy Norton, Spencer's mom

You NEVER think “it will happen to you” but… “it” happened to my family, my son. At only ten weeks old my son was fighting for his life. This is his story…

Spencer was born at home, on 11/08/13, with a team of experienced midwives. He was a healthy 9.1lbs., and appeared completely typical. He was perfect. Absolutely perfect. Except he had a secret, Congenital Heart Disease. He kept this secret for a long time. Almost too long.

At 24 hours postpartum, our midwives came back to our house to check on Spencer. Again, everything appeared typical, no physical signs of distress. Therefore, no oximeter was ever placed on him.

On day 7 Spencer was seen by our family doctor. Again, he appeared typical. He was back to his birth weight. Latching on and eating well. His body was doing an amazing job at compensating for his lack of oxygen. Too good of a job. No one ever thought it medically necessary to check a “healthy” boy’s oxygen level. So, he continued to hold on to his secret.

December 21st, Spencer caught his first cold along with my husband, daughter and myself. We got better after a few days. Spencer stayed sick, in fact, he was getting sicker. Worry set in.

I took Spencer back to the doctor.  He was now 8 weeks old. At this appointment I expressed my concern about his cold. I emphasized that something didn’t seem right. I asked, “could it be allergies or asthma?” I didn’t know to ask if it could be heart disease, I wish I did. Spencer had only gained 6 ounces over his birth weight. STILL no oximeter was placed on him. I was advised to come back in two weeks. However, Spencer didn’t made it two weeks.

My husband and I had had enough. Spencer was still sick, his skin started to look dusky and we knew something was wrong. We called the local children’s hospital and spoke with a consulting nurse. She immediately said to call 9-1-1. The medics arrived. This was the first time an oximeter was placed on my son!  He was now 10 weeks old.

Trauma began. Things progressed from a phone call to an airlift in a matter of hours. Before we knew it, we were standing over our happy baby in an induced coma at Seattle Children’s Hospital. This is where, literally, at the eleventh hour, we learned of Spencer’s secret. Our sweet boy was born with Congenital Heart Disease.

Things quickly went from bad to worse! ONE day after getting our son to the hospital he was placed on life support. He remained in the hospital for 6 weeks. Fighting for his life.

If an oximeter was placed on Spencer at 24 hours old, he never would have got as close to death as he was. Yes, he still would have had heart disease. Yes, he still would have needed open heart surgery. But he never would have suffered the way he did. If my husband and I were not advocates for our son I am afraid his outcome would have been different. An unbearable reality.

An oximeter test is so simple. It saves babies lives! As a mother who has lived through the unbearable, I ask, why is it not a statewide requirement that every child not tested? No matter where a baby is born in Washington, it should be protected from a tragic story like Spencer’s. Spencer is a miracle. We are blessed he survived. NO baby should suffer like him, not when it is so simple to detect.

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What is your why?

Guest blogger: Lindsay Hovind, Washington Government Relations Director

LIFE is why. The American Heart Association and American Stroke Association just launched its new positioning focused on an emotional brand message and a concise answer to the question of why we do what we do: We believe everyone deserves to live a healthier, longer life. Why? Life. Life is why.

Each of us has our own “why” for why we work to help the American Heart Association achieve its goals. For one survivor, it’s the chance to see her daughter on her wedding day. For one of my colleagues it’s the chance to live a life full of travel and adventure. For me…healthier communities is why…seeing every family in every community have safe places to exercise and play, and access to healthy, delicious food. We each have our own “why” that moves us to contribute time and energy to AHA’s mission – some through advocacy, some through medical research, some through sharing stories of triumph or loss.

What’s your “why?” We’re lucky to live in a wonderful state like Washington and each of you is helping our neighbors to live healthier lives. Why do you do it? We’d love to hear from you. Email us your “why.”

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Mark Your Calendar for the EmpowerMEnt Challenge!

We’re gearing up for National Childhood Obesity Awareness Month and we want you to be in on all of the action!  Throughout September, we’re encouraging families across the country to take control of their healthy by participating in the EmpowerMEnt Challenge.  Each week, families and kids will pursue a different goal, including eating more fruits and veggies, limiting sugary drinks, reducing sodium intake, and increasing physical activity.  Each goal is fun, simple, won’t break the bank and can be done as a family.  And by the end of the month, families will be a step ahead on the road to a heart-healthy life. 

So mark your calendar for the challenge kick-off on September 1st!  Complimentary templates and activities, broken down into the themed weeks, are now available on www.heart.org/healthierkids.  In addition, you're invited to join our EmpowerMEnt Challenge Facebook group, where you can make the commitment to take the challenge and share your progress with others.  

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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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