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Advocate Spotlight: Anne and Cade Lindsey, Kentucky

A Story from the Heart
by Anne Lindsey, mother and CHD Advocate

The heart. It is our life force. The rhythmic pulse with which our bodies are oxygenated and cleansed. Our hearts are responsible for pumping about five quarts of blood each minute which is equal to about 2, 000 gallons of blood each day. In order to accomplish such a feat, our hearts will contract nearly 101,000 times per day. Even at rest, the muscles of the heart work twice as hard as the leg muscles of a person when sprinting. Without a strong heart, our life and normal body functions are in jeopardy.

Congenital Heart Defect Awareness week is February 7th through the 14th. I’ve considered many ways that I, the mother of a child with a congenital heart defect, could raise awareness. I wear my red heart pin throughout the month of February. It’s a subtle gesture, but one that is important to me. The pin sits close to my heart each day. The stitches that are etched across its center remind me of how quickly life can change, and how important and precious the gift of health is.

When it comes to CHD, there are many statistics to quote. I can tell you that each year in the United States nearly 40,000 infants are born with a CHD. That’s 40,000 families whose lives are forever changed. I can tell you that CHDs are the most common type of birth defect. Of the 40,000 babies born with a CHD, 1 in 4 of them will have a critical CHD that will require surgery or other procedural interventions within their first year of life. I can tell you that 75% of babies born with a critical CHD are expected to live to see their first birthday, and 69% of those babies will live to 18 years of age. I can tell you that as the mother of one of those babies, statistics like these take your breath away. But, I can also tell you that there is hope.

Medical innovation and improved treatment options have increased the life span and quality of life for CHD patients. In fact, today there are about 1 million adults in the United States living with a CHD. My own son, born with a critical CHD, is now 11 years old. Yes, there is hope. We find hope in the form of life saving procedures and technologies that continually improve the quality of life for our children. We find hope in surgeons and doctors and nurses and therapists and technicians who do not lose sight of the impact and difference they are making in our lives every day. We find hope in mothers and fathers and sisters and brothers who share our pain and understand our burden.  We find hope in the communities and friendships that encourage and support us in some of our darkest moments.

I can tell you all these things and more, but perhaps the most effective way I can raise awareness is to allow my son the opportunity to speak. My son, Cade, has allowed me to summarize some of his story with you in order to bring understanding and awareness of Congenital Heart Defects.

Although we have always been open and honest with Cade about his heart condition, he says that he didn’t realize the significance of his heart defect until he was about 8 or 9 years old. Around this time Cade was preparing for his third open heart surgery. His last major hospital stay was several years ago at age 3, and much of that time he doesn’t remember. With the realization that his heart was different, came many questions.

Cade always considered himself to be just another kid, but now he realized that these differences in his heart sometimes meant facing big challenges. CHDs are not simple. Complications often arise from the interventions and surgical procedures that are designed to bring relief and repair. Cade, after his third open heart surgery, suffered a stroke which left him paralyzed on his right side. His recovery has been nothing short of remarkable, but the proof is still there. He has a limp and continued weakness in his right leg. He’s also developed other complications which have brought us to our most recent hurdle – preparing for a heart transplant.

Throughout our conversation, Cade talked about how he came to accept that his heart was different. He says his family and friends have helped him realize that it’s not actually that bad having HLHS. He talks about how nicely he is treated by everyone, and this makes him feel a lot better about himself. He knows his limitations. He’ll tire easily if he runs too much and missing his medication would make him feel sick. He notices many differences between himself and other typical children his age. But rather than focusing on these differences Cade is determined to look towards the future. He says, "Coming up, I’m going to have a heart transplant, and I’m going to be really happy about that." He hopes that a new heart will allow him to do some of things his peers are doing now. Perhaps the most important message from our conversation came near the end when I asked Cade what people should know about CHD. He responded, "Well, just because you are different because you have this CHD doesn’t meant that you’re not a normal person." That’s the beautiful truth: Although his heart is shaped differently, it still loves just the same.

*Statistical information was taken from the following websites:

http://www.cdc.gov/ncbddd/heartdefects/data.html

http://www.arheart.com/cardiovascular-health/amazing-heart-facts/

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Take the You're the Cure Advocate Survey

2015 was a great year for You're the Cure advocates and the many policy efforts that you work on. We have big plans for 2016, and we want to hear from you and what you want to see in the future for You're the Cure.

So take the survey now and let your voice be heard.

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Be Good to Your Heart this Heart Month!

February is American Heart Month and what better time to make simple, heart-healthy lifestyle changes?  Want to incorporate more physical activity into your day? Need healthy, low-sodium recipes? Would you like more information on controlling your blood pressure? It’s as easy as a click!

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Grace Firestone

Grace Firestone Delaware

Grace Firestone was given an incredible gift--a second chance at life. Just days after her high school graduation, her brother saved her life by performing CPR until EMTs arrived and what she’s done since is extraordinary. Grace understood that her story had the ability to inspire and worked with American Heart Association staff to convince decision-makers that teaching every student hands-only CPR was not only feasible, but necessary. Thanks to her dedication and a two-year effort, all Delaware students will now graduate with the skills to save a life.

In addition to her health advocacy work, Grace is preparing for Fall 2016 entry into medical school, serves on the patient advisory board of Christiana Care Health System and is captain of her club soccer team, a sport she wasn’t sure she could return to. For a woman barely in her 20s, Grace has already left a lifesaving legacy and her work is just beginning.

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Join us on National Wear Red Day, Friday, February 5

The American Heart Association’s Go Red For Women are asking for your support by participating in National Wear Red Day® on Friday, February 5, 2016 and donating to help fund research during American Health Month.

Why Go Red? Heart disease and stroke cause 1 in 3 deaths among women each year, killing approximately one woman every 80 seconds.  Fortunately, we can change that because 80 percent of cardiac and stroke events may be prevented with education and action. That’s why this year we are asking that you wear red on National Wear Red Day® and donate to Go Red For Woman. By doing so you help support educational programs to increase women’s awareness and critical research to discover scientific knowledge about cardiovascular health. 

And don’t forget to make your heart health a priority. Schedule your Well-Woman Visit, a prevention check-up to review a woman’s overall health so her doctor can measure blood pressure, check cholesterol and look for signs of heart disease, stroke and other illnesses. Then encourage others through your social channels to do the same.

We couldn’t make positive changes without the support and donations by individuals like you.

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Christi Nelson, Ohio

Christi Nelson Ohio

I was 29 years old and completely healthy. October 18, 2006, was just like any other day at Akron Children’s Hospital where I was completing my internship to be a Child Life Specialist.

I went out to a bridge that connects the hospital to a parking garage to make a phone call, and that is when my life changed. I collapsed and my heart stopped - I died on that bridge. Security caught my collapse on camera and called a code blue. I went five minutes before my first responder arrived and began administering CPR and AED shocks. Staff from the E.R. at Akron Children’s arrived at the scene and took over my treatment and after approximately 20 minutes of working on me, they decided to transport me to Akron General Medical Center.

I was without a heartbeat for 62 minutes and received 13 shocks with an AED before doctors at Akron General were able to revive my heart but I was not out of the woods yet. I was put in a hypothermic coma in an attempt preserve any possible remaining brain function and my family was given a less than 5 percent chance that I would ever wake from my coma. However, after almost a week, I did wake up. I spent a month recovering in the hospital where I had to relearn to how walk, talk, and eat. I received a defibrillator/pacemaker and underwent dialysis as I also experienced kidney failure. 

I have since been diagnosed with Primary Electrical System Disease which means I have a severe arrhythmia in my heart that tends to put me in Ventricular Fibrillation (V-Fib), which is the most serious type of cardiac rhythm disturbance. My defibrillator will save my life.  I have also received two heart ablations since my cardiac arrest. 

Seventeen months after my cardiac arrest I gave birth to an amazing little girl who is the light of my life and I thank God each and every day for my second chance at life and the chance to fulfill my dream of being a mom.

There is something important to note about my story. In the security footage, you can observe individuals who passed me on the bridge and left me laying there, not attempting to help me before my first responder came on the scene. Once she did arrive and started CPR, nobody attempted to help her either. It is evident that people do not always know what to do in an emergency situation; therefore, they do nothing. This is why passing CPR in Schools legislation in every state is so important. The more individuals we can train with bystander CPR, the more lives we can save. While I am a story of survival, there are too many stories that are not.  Let’s work together to make a difference.

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Get Social With Your Members of Congress

Will you be on Facebook or Twitter today? Your Members of Congress and their staff will be, and it's a good place to reach them according to a report released in October by the Congressional Management Foundation (CMF).

The CMF report, #SocialCongress, says Congressional offices are listening to social media chatter and it takes relatively few posts or comments to get their attention. That's good news for us!

So, how can you use the Facebook newsfeed or Twitter timeline to get the attention of lawmakers and help pass heart healthy policies?

  • Follow your members of Congress, as well as state and local elected officials on Twitter. ‘Like’ and ‘Follow’ their pages on Facebook.
  • Tweet about our health policy issues, tagging the appropriate legislators by using the @ sign and their Twitter handle. For example: I’m from Pennsylvania, so I’d tag my U.S. Senators by including @SenBobCasey & @SenToomey in my tweet.
  • If they allow it, you can post about our issues directly on the Facebook pages of elected officials. Frequently, that feature is disabled but you are able to comment on their posts. According to #SocialCongress, Congressional offices typically monitor those comments for a limited period of time. Your best bet is to comment within the first 24 hours after a post.
  • Rally your friends and family members to tweet, post or comment about an issue on a single ‘day of action’. CMF’s survey data shows just 30 or fewer comments can be enough to make a legislative office pay attention.
  • Be sure to use the campaign hashtag if one has been created by your advocacy staff partners. The #hashtag allows all the relevant posts to be woven together to tell our story, and makes your post searchable by others interested in the issue.    

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Mark Your Calendar and Make Plans to Join Us at Legislative Hall!

We hope you'll register and make plans to join us for Delaware 2016 Advocacy Day: You're the Cure at the Capitol on May 19, 2016. Gather with others from across the First State as we meet with lawmakers in support of heart-health policies, like protecting Delaware's youth from dangerous tobacco addiction.

Simply register today, make plans to join us on May 19th and we'll take care of the rest!

What:
American Heart Association DE Advocacy Day

When: May 19, 2016, 11:30 am - 1 pm

Where: Legislative Hall, Dover, DE

Take a moment now to register, and then watch your inbox for more details as the date approaches.

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Charlotte and Rachel Richey, Kentucky

Charlotte and Rachel Richey Kentucky

On May 28, 2015, four-year-old Charlotte was diagnosed with an electrical heart condition called Catecholarminergic Polymorphic Ventricular Tachycardia (CPMVT). The diagnosis came after she had two incidents in which she lost consciousness and had to have CPR performed to save her life. After follow-up appointments and many tests, Charlotte was diagnosed with this condition that has no cure, but right now is maintaining very well with preventive measures. Charlotte is always at risk of v-tach, either from too much physical activity or from emotional stimulus that raises her heartbeat. She is on medication, but many preventive measures have been put into place, including CPR recertification for her parents, ensuring that other caregivers are CPR certified, and the purchase of an AED that stays in the home or travels with her.

Charlotte is a very lively little girl who does not meet a stranger and is full of personality. It is hard to slow her down, but it is necessary at times because of the possible risk of v-tach. She did not exhibit any symptoms prior to her first incident, which at that time was diagnosed as a concussion. Luckily, with persistence and recommended testing, we were able to find answers, even if it was difficult to process. We are very confident in her care and the precautions that we are taking, but it would offer great peace of mind if more individuals were CPR trained and could offer a quick response if a problem did present itself.

--Rachel Richey, mom to Charlotte

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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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