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Update on Christian Lybbert

Aimee Lybbert, Mother of CHD (Congenital Heart Defect) Survivor, Christian, updates us on his life now and what she sees every day as a “Heart Mom”

You can catch up on Christian’s story from nearly two years ago here.

Christian will be three at the end of next month. He's been through two more open heart surgeries and four open abdomen surgeries and one surgery through his ribs on his diaphragm. He's now living at Seattle Children's and is currently on the waiting list for a heart transplant.

He has quite the collection of scars. We as his parents do too.

We have been at Seattle Children's for almost 5 months now with most of our time spent in the Cardiac Intensive Care Unit (CICU).

We have seen our share of families and children go through the CICU.

I've seen parents waiting anxiously for their surgery pagers as they wait for any update, I've seen parents hugging surgeons. I've seen rooms that have one little body in the room surrounded by scores of machines and staff working together to get the child through it all. I've seen parents cry with joy as their child had the breathing tube removed and they start to talk again. I've walked past rooms where moms are holding their children for the first time in forever as the nurse takes pictures. I've watched as they get transferred to the recovery floor, and I've watched parents take video of their toddler as he walked out the front door of the hospital after he conquered heart surgery. I've seen such joy at the many triumphs and miracles that happen here. 

I've also seen complete and utter despair. Sometimes things don't go as anticipated or as hoped.

Christian was like that. He had several emergency surgeries and he once bled out from a Gastrointestinal bleed and he had to be intubated and scoped while they transfused almost the entire volume of his blood. There were days that I didn't know how I could go on.

When my son headed off to one of his emergency surgeries I was a complete mess and was sobbing in the elevator on my way to the cafeteria. Another heart mom saw me. She asked me my son's name and told me that she saw me crying and couldn't leave me alone like that. She gave me a hug and said she'd pray for me.

She got off on her floor and I kept traveling down. The next day a card arrived with a note and a Starbucks gift card from her.

She had her own troubles and she took the time to look out for another person in need.

There are a surprising amount of kids and parents whose journey includes a hospitalization and or surgery in order to keep their CHD in check. Congenital Heart Defects are the most common birth defect. Approximately 25% of kids with a CHD will require a surgery or other intervention to survive. If you're on the outside looking in the most important thing to do is just to listen and quietly let them know you love them. If you're on the inside of the CHD storm it is important to realize that you're not alone.

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Little Hats Big Hearts

February is Heart Month and thanks to dedicated volunteers we are participating in the Little Hats, Big Hearts program for the first time.

This program originally started in 2013 in Chicago. It was launched in the Puget Sound last fall and became so popular that we received over 2,000 red hats from volunteers in Washington and other states.

Each newborn born at a participating hospital will receive a red hat lovingly knitted by a volunteer for the American Heart Association. The hospitals participating include Evergreen Health, Kirkland; Overlake Hospital Medical Center, Bellevue; and Swedish Ballard, Edmonds, First Hill and Issaquah, St. Joseph Medical Center, Tacoma, St. Elizabeth Hospital, Enumclaw, St. Francis Hospital, Federal Way, Harrison Medical Center, Silverdale and Harrison Medical Center, Burien.

The program is part of an effort to raise awareness about heart disease and encourage families to choose heart-healthy lifestyles. Heart disease is the leading killer of Americans and congenital heart defects are the deadliest type of birth defects.

Thanks to hard work during the 2015 legislative session all babies born in Washington are now screened for congenital heart defects using noninvasive, pain-free pulse oximetry screening that measures the oxygen saturation in the blood. The screening is now a requirement in the state of Washington.

Thank you again to the volunteers who knitted these wonderful hats. We hope everyone has a great Heart Month!

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Update on Tobacco to 21 Legislation

The 2016 legislative session has started and things are moving quickly. A bill to raise the tobacco and electronic smoking device purchase age to 21, House Bill 2313, which the American Heart Association is supporting received its first hearing in the House Healthcare and Wellness Committee on January 21st.

During the hearing, AHA volunteers also participated in a press conference held by the Attorney General on this legislation. Numerous health organizations including the American Cancer Society and the American Lung Association also participated.

Four bills were heard in the committee on the 21st with HB 2313 being last. Our dedicated volunteer Eric Rothenberg testified in support of the bill. Because the bill was heard last not everyone who signed in to testify was able to but Eric did a great job representing the AHA.  Overall, the majority of those in attendance at the committee hearing testified in support.

On Friday February 29th the bill was formally voted on by the House Healthcare and Wellness Committee passing with a vote of 9 ayes. 

As of today, February 8, when this post is being written we are still hoping for a hearing in the Appropriations Committee which is necessary for the bill to progress through the House. On Friday, February 5, the Senate version of the legislation died when it failed to get a vote in committee.

The American Heart Association believes HB 2313 is an important piece of legislation that will drive down smoking rates in Washington. In fact it was the focus of our annual lobby day this year on February 9th.

We hope that this issue will receive the necessary hearing and votes to keep progressing during the 2016 legislative session and that we can count on your support. Please keep your eyes open for our emails on the issue and take action when we call upon you to message your lawmakers.

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Advocate Highlight - Sara Hoffman

Hi my name is Sara and I am 37 years old. This year should have been one of the happiest times of my life. On April 18, 2015, I was married on a beach in Mexico. Like any bride, I spent months planning the wedding and could not wait to celebrate with our friends and family. The shocking part of this story is that I suffered a major heart attack during the flight on my way to Mexico.

I felt fine in the morning and for the first four hours of the flight. All of the sudden I started experiencing burning in my chest, jaw and arm pain. I instantly knew something was wrong. After about 20 minutes of experiencing symptoms, I asked the flight crew to land the plane. I knew that my age and the fact that we were on the way to our wedding could make people think I was just having a panic attack so speaking up for myself felt more important than ever.  I was later told by my cardiologist that I would have died on the plane that day if we had not landed the plane.

We did an emergency landing in Louisiana where I was wheeled into the ER with my wedding dress in tow. I had an Angioplasty and a stent placed in my left anterior descending artery. My heart stopped twice during my procedure and I had to be defibrillated both times. My poor husband thought he was going to be a widower and we weren’t even married yet.  Amazingly, I was cleared to fly to Mexico just two days after my procedure. The day of our wedding was amazing but and I felt so lucky just to be alive and standing there.

We cancelled our honeymoon so I could come home and recover. I had not felt well while in Mexico and ended up getting re-hospitalized the day after we came home. I was in congestive heart failure and was experiencing terrible side effects from my medication.

My recovery has been hard but I am learning so much about heart disease along the way. I knew my father had a heart attack at age of 36, but I can honestly say I never considered myself to be at risk. I was healthy, I used to run full and half marathons, I don’t smoke, and I am a vegetarian. I thought everything I was doing would counteract my family history.  I didn’t understand the power of genetics.

I hope my story can encourage other women to schedule a Well-Woman Visit and talk to their doctor about their family history and personal risk.

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Youth and e-cigarette exposure

About 18 million U.S. middle and high school students – 70 percent – are exposed to e-cigarette (also known as e-cigs) advertising online, in stores, newspapers, magazines and movies, and on television, according to a report released by the U.S. Centers for Disease Control and Prevention.

E-cigarettes deliver a nicotine-containing aerosol popularly called vapor by heating a solution usually made of glycerin, nicotine and flavoring agents. An American Heart Association policy statement said that e-cigarettes target young people and can hook people on nicotine and threaten to “re-normalize” tobacco use.

In a recent statement, AHA CEO Nancy Brown said:  “The tried-and-true methods to attract a new generation to tobacco must be reined in,” “Otherwise, more and more young Americans will put themselves at risk for heart disease, stroke or even an early death as a result of taking up tobacco in any form.”

The e-cig ads are following a familiar tobacco marketing playbook of old with themes of independence and rebellion that are aimed specifically to addict the next generation.  E-cig advertising to young people “is like the old time Wild West,” said CDC Director Tom Frieden in a media briefing. With no regulations and growing ad budgets, spending nearly tripled in one year from $6.4 million in 2011 to $18.3 million in 2012, according to a study in the American Journal of Preventive Medicine.

The CDC said that manufacturers of e-cigarettes also target youth through advertising on social networks. Online ordering makes it easier for kids to purchase e-cigs and related products.

In 2014, e-cigs became the most common tobacco product used by middle and high school students. The most recent CDC data shows that from 2011-2014 e-cig use by high school students increased from 1.5 percent to 13.4 percent. Among middle school students it rose from 0.6 percent to 3.9 percent. This sudden and dramatic rise in youth use sadly illustrates the effectiveness of unregulated advertising for these products. 

For the full story, please visit here.

We are working to raise awareness on the issue at the local, state and federal levels on this growing public health issue.  If you want to get involved locally, please contact Josh Brown for more information.

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Eric Price - advocate highlight

Eric Price’s instinct for CPR response kicked in when Skyler Nelson collapsed of cardiac arrest at West Jordan Middle School on Oct. 14. Price is vice principal at the school in West Jordan, UT, and had completed a CPR refresher course just a few days before the 14-year-old went down while jogging with PE classmates around the gym.

KUTV in Salt Lake City featured the story, including gym surveillance video, which shows how officials at the school responded immediately. They called 911. Special Education Teacher Lucia Evans tried to find Skylar’s pulse and Price began CPR compressions. School Resource Officer David Hood assisted with compressions until Skyler’s heart began beating on its own.

The American Heart Association recently honored their teamwork with our HeartSaver Hero Award. Skyler was also on hand to help present the award and, although he doesn’t recall much of the event, he is grateful to his lifesaving team. "I'm feeling fine. I'd just like to thank all the people who supported me through this," he said. Doctors have determined that Skyler was born with a genetic heart defect that had gone undetected and he underwent surgery to have a defibrillator implanted in his chest to prevent future problems.

The lifesaving incident has led to CPR training at the school. Jordan Valley Medical Center and its owner IASIS Healthcare purchased CPR in Schools kits in the past and will use these to train eighth-grade students during their health class on Dec. 8.

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Washington Marks 10 Years of Smoke Free Air

It’s hard to believe but December 8th marked the 10th anniversary of the implementation of the voter approved smoke free air law in our state.

We might not always see eye to eye on every issue but on November 8th, 2005 Washington voters in every county approved Proposition 901 and it went into effect 30 days later. Overall 63.25% of voters said YES to creating smoke free public places and places of work. Not many voter initiatives pass with such overwhelming support but the American Heart Association as one of the many groups working on this issue was so proud to see Washingtonians overwhelmingly say they didn’t want to breathe toxic smoke-filled air when they went out to public places.

Over the last 10 years there have been multiple challenges to the current law. Groups have tried to weaken it by creating exemptions for cigar bars and hookah lounges but with the help of advocates like you they have been unsuccessful.

So this December as you find yourself out and about, take a deep breath and thank yourself for making clean air possible.

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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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We're Feeling Grateful

As AHA Advocacy staff, we get to work alongside the most remarkable volunteers- like YOU! We get to see lives improved and lives saved as a result of the work we’ve done together, and for that, we're grateful.

As You’re the Cure volunteers, you share personal stories of loved ones lost too soon, of survival, or of triumph over heart disease or stroke- all because you know your stories will make a difference in someone else’s life. It is often those stories that convince lawmakers to pass the policies making our communities healthier.

Because of you, more babies are being screened with Pulse Ox and having their heart defects corrected before it’s too late. Because of you, people in communities around the country have been saved by students who learned CPR in school. Because of you, people are getting better stroke care, families have safe places for active play, fewer people are smoking, and kids are eating healthier food at school.  The impact you’re making is incredible, and our communities are better places- because of you.

You make us cry. You share your joy. You inspire us. You amaze us. And we’re just so grateful for all you do.

We’re including YOU as we count our blessings this month, and we wish you a wonderful Thanksgiving with family and friends!   

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Advocate Highlight- Heidi Stewart

Hi my name is Heidi. I might look like your average college student but what you can’t tell just from looking at me is that I am a survivor.

Growing up I was very active. I began competitive swimming at 8 years old. Everything seemed fine until my junior year of high school. The first sign that something was wrong was when I passed out after a swim meet. My parents took me to the doctor to see what could have caused me to pass out and after seeing a specialist and undergoing many tests I was diagnosed with anxiety.

My dad suffers from anxiety as well so he taught me how to deal with it and how to control the attacks. But on February 12, 2013 my life changed forever. I woke up tired but headed to school anyways. I began feeling weak and thought an anxiety attack might be starting so I spoke with my first period teacher who knew about my attacks and he gave me a pass to go to the library to study. I don’t remember what happened in my second period class. Third period was my leadership class and I really did not feel well at this point. I remember feeling worse and worse as the day went on. Knowing I needed help I headed to the school office. I barely made it before collapsing just inside the door.

Thankfully my school had an AED and within moments CPR was being administered and the AED was being used. The administration, security guard, and school nurse performed CPR for 10 minutes, and shocked me 3 times with the AED.

After I arrived at the hospital and they stabilized me, the emergency room staff proceeded to perform an ECG but found nothing wrong. They sent me to have an MRI to see if there was any brain damage; during the full body MRI is where they found the problem.

They had found a large sum of scar tissue on the bottom right ventricle of my heart which is a sure sign of Arrhythmogenic Right Ventricular Dysplasia/ Cardiomyopathy (ARVD/C for short).  ARVD is a form of cardiomyopathy in which the heart muscle of the right ventricle (RV) is replaced by fat and/or fibrous tissue. The right ventricle is dilated and contracts poorly. As a result, the ability of the heart to pump blood is weakened.

On February 14th, 2013 they placed an Internal Cardiac Defibrillator (ICD) into my chest. It works as a pacemaker and a defibrillator in the case of emergency. I am also on two heart medications: a beta blocker and an antiarrhythmic/ beta blocker.

Since that day I have made many adjustments. At one of my first follow-up appointments I was handed a list of physical activities that I could no longer do. I love to be active and thankfully have found new ways to remain active without putting my life at risk.

The American Heart Association funds life-saving research; research that saved my life and the lives of so many others.

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