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Christopher Pena, Mississippi

Christopher Pena, Richland, MS

Christopher's Mom, Kristi, shares her son’s story with heart disease...

An update on Christopher since the original article published in 2014: Since the article, Christopher has been diagnosed with prolonged QT Syndrome, an electrical issue of the heart. Two weeks ago, we learned that the function of his heart has increased, while the thickness and enlargement has also increased (cardiomyopathy relapse).  At this time, we remain hopeful that this is due to growth and an increase in heart medicine will fix this issue.  In the meantime, it's a reminder that we must live by faith every day. In January, Christopher went on his 'Catch a Dream' trip where he harvested an 8 point white tail deer. They say that while he is the youngest hunter to date, that he is the best shot they've seen!

[Original Article]

My son Christopher was born in April 2008.  Shortly after birth, he appeared to be struggling under the vigilant watch of his nurses.  A pulse ox reading indicated low oxygen, which led to a chest x-ray revealing Christopher had a severely enlarged heart.  Doctors diagnosed him with non-compacted cardiomyopathy, a very rare condition in which the heart muscle remains sponge-like after birth and causes the heart to be very weak. 

Christopher's cardiomyopathy affects his right and left ventricles, where it is very hard for his heart to pump and function correctly.  The medical team told us that the only option was a heart transplant.  Without a guarantee of survival, we opted against a heart transplant with only the very best quality of life in mind for our son.  Christopher was given 6 months at the most to live.  We believed that the doctors could tell us what they knew from books, but our Mighty God is the Great Healer and could fully heal his heart either way.  We knew our son would be okay, but we would need some help. 

At 45 days old, Christopher was admitted into hospice care.  Fifteen months later, he was released from hospice when an echo cardiogram showed that his heart function had tripled! 

At 18 months, his heart function was almost normal!!  God still performs miracles each and every day.

In February 2010, it was discovered that Barth Syndrome (BTHS) is the cause of Christopher's cardiomyopathy.  Barth syndrome is a very rare, sex-linked genetic disorder of lipid metabolism that affects males.  Typically, boys with BTHS present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth.  Other important features of BTHS include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature.  Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. 

There are less than 200 known cases of Barth Syndrome worldwide.  If people would hold hands from one end of the earth and go all the way around the world, only one of those people would be a boy with Barth syndrome.  It was described to us like finding a needle in a haystack for the doctors to discover that Christopher has BTHS!  There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled. 

Christopher has most of the characteristics, including cardiomyopathy, neutropenia, muscle weakness and some other problems.  He has homebound, speech, physical and occupational therapy as well as therapeutic horseback riding.  He is currently doing very well, all things considering! 

Having this disease, which impacts our entire family, has been both the worst and best thing to ever happen to our family.     We still depend on miracles every day.  God is in control; He doesn't do half miracles and our trust in Him has never failed us.  Christopher has done many things to represent miracles, Barth syndrome, our local Children's Miracle Network hospital and Blair E. Batson Hospital for children.  He has been in countless news stories, mini documentaries and on the cover of multiple local magazine covers.  He even was mentioned in a recent Wall Street Journal article about rare diseases.  In addition to that, he is one of the 'faces' describing the 'look' of Barth syndrome in the orphanet journal of rare diseases written by one of the Barth syndrome specialists.

Christopher has met many amazing individuals along the way, including the President, Miss America and numerous other celebrities.  Christopher is in fact a living legend himself.

This past year, Christopher had a mild stroke.  For many reasons the American Heart Association is a cause near and dear to the hearts of our family.  Christopher represents the true need for pulse ox screening and congenital heart defects and stroke awareness.  We thank the American Heart Association and its volunteers for their tireless efforts in making sure the public has the knowledge and medical care needed to save lives.

To read more about Christopher or to follow his progress: Facebook--  Crusade4Christopher and/or CaringBridge Christopher. 

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CPR in Schools update

Last month you received messages from us asking you to contact your lawmakers in support of CPR in Schools.  Here's an update on our progress so far.

Legislation has been introduced in both the State Senate and the House of Representatives.  In the Senate we'll be talking about Senate Bill 647.  This bill has been referred to the Senate Education Committee.  In the House, we've got House Bill 5160 which has been sent to the House Education Committee.

What's next?  Keep watching your email for news about our upcoming Day at the Capitol in support of this initiative - we'd love to have you join us in person to learn about the issue and talk with your lawmakers about the importance of CPR!  If you'd like to get involved with this campaign, feel free to email anytime!

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Braydee Clair Little, Mississippi

Braydee Clair Little: Pope, MS

One of the happiest moments in our life as a married couple was March 7, 2011, when our second daughter, Braydee Clair, was born. 

Two days later when we were getting ready to be discharged, the doctor examined Braydee Clair for her last full checkup.  At this time is when the physicians discovered that her organs were not all on the correct side.  Her heart is on the right side of her chest, her liver is midline, and she has multiple small spleens.  Her heart is like a "mirror image" of a normal heart.  The blood vessels bringing blood from her lungs were not connected to the heart properly.  She also had a hole between the two upper chambers of the heart, and between the two lower chambers of her heart.  Also, the valve inside the heart between the right upper and lower chambers was not normal. None of these things were detected during my pregnancy with the ultrasounds.  They did release her to go home, but we had to follow up with a cardiologist as soon as possible.

Once meeting with her cardiologist, it was decided that eventually over time she would need to have surgery on her heart.  At seventeen months of age, Braydee Clair, received her first open heart surgery.  The surgery took place in Philadelphia, PA at The Children's Hospital of Philadelphia.  The surgery was so complex that her physician near our home felt more confident sending us to do the surgery in Philadelphia.  While in Philadelphia, Braydee Clair ended up having two open heart surgeries and four bypasses.  We stayed in Pennsylvania for five weeks.  The surgeries corrected the way the blood came back to the heart and closed the holes between the chambers.  It was a very complex surgery, but  Braydee Clair has recovered from the surgeries, and she is doing amazingly well! 

She has future surgeries to come and takes medicine daily for her heart.  She still has an abnormality of the mitral valve on the right side of the heart that "leaks" because of the difficulty repairing it initially.  This is partially responsible for heart enlargement.  Braydee Clair still has no sinus node (internal pacemaker), so her heart rhythm is maintained by an internal "backup" pacemaker. 

All of this seems like a lot, but we know God has a special purpose and a specific plan for Braydee Clair.  We thank Him every day for blessing our family with her and her "unique" heart.  Anyone that meets her falls in love with her!  Braydee Clair is our inspiration, and we are just enjoying each day that the good Lord allows us to have with her. 

Braydee Clair is now three years old.  There is no set date for the next surgery because they want her to grow a little more.  She is doing extremely well with her current condition, and we are buying as much time as we can before she needs another surgery.  However, my husband and I are still praying that God will continue to heal Braydee Clair's heart completely without needing anymore surgeries.
In dealing with Braydee Clair's heart problems and surgeries, we have found comfort in this particular Bible verse. "I chose you before I formed you in the womb, I set you apart before you were born.  I appointed you a prophet to the nations."  Jeremiah 1:5.  It just gives us a sense of peace in knowing that God made Braydee Clair this way for a reason, and that He will use her and her special heart as a great testimony for other families. 
Braydee Clair's heart defects were undiagnosed before birth.  We are fully on board to join forces with the American Heart Association and raise awareness and approval of passing life-saving policies like a mandatory pulse ox screening across our state to find undetected congenital heart defects before a newborn leaves the hospital.  Join our family in striving to get pulse ox screenings required in Mississippi.  OUR BABIES ARE WORTH IT.

--Written by Lindsee Little, mother

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Kansas 2015 Legislative Wrap-Up

The 2015 Kansas legislative session recently came to an end after weeks of long and contentious debate. Thank you to our You’re the Cure advocates whose countless letters of support, e-mails, phone calls and visits with lawmakers were vital in helping us maintain heart healthy policies in Kansas! Below is a legislative wrap-up outlining all of the progress we made with your help.



Tobacco Tax

  • The Kansas Legislature approved a 50-cent increase to the state’s tobacco tax.
  • The new tax on a pack of cigarettes will be $1.29.
  • This is the 30th highest in the nation and roughly, 25¢ below the national average.
  • The tax will raise an estimated $40 million in additional revenue for Kansas while reducing smoking rates by nearly 7%.
  • 8,400 Kansans under the age of 18 will avoid becoming adult smokers.
  • 8,600 adult smokers would quit smoking with this increase.

Tobacco Prevention

  • American Heart Association advocated for additional prevention funding. We believe a stronger foundation was established and will continue to build on these efforts next session.
  • Less than $1 million is currently allocated for prevention from the state.
  • The CDC recommends Kansas spend $27.9 million on a program modeled after the best practices for prevention and cessation initiatives.
  • Adequately funding tobacco prevention programs in Kansas is critical to long-term, sustained reductions in tobaccos usage.


  • Lawmakers approved several new provisions regarding electronic cigarettes.
  • Approved language establishes a tax on the nicotine-based refills for e-cigarettes.
  • The AHA is cautious of the language that could reduce future FDA regulations of e-cigarettes that is being developed nationally.
  • There’s still a lot unknown about long-term health implications of e-cigarettes and their efficacy as a cessation tool.
  • With so much unknown about the product it is dangerous to pass legislation, as Kansas did, without formal discussions and hearings.

Critical Congenital Heart Disease Screening (Pulse Ox)

  • A bill establishing standards for CCHD screening using pulse oximetry did not receive a hearing in the committee this year.
  • The Kansas Health Department and Environment announced all Kansas newborns are being screened.
  • The AHA is pleased that all newborns are reportedly being screened but we are concerned that compliance is voluntary. We will continue to push for legislation or administrative rules to ensure newborns are screened using pulse oximetry testing with recommended standards.

Thank YOU! Please stay tuned to your e-mails on how you can help us with our life-saving mission. As always, thank you for everything you do. We appreciate your advocacy efforts and support of the American Heart Association!

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Gov. Snyder proclaimed February 2-6 as Sudden Cardiac Death of the Young (SCDY) Awareness Week

Every year, sudden cardiac death of the young (SCDY) claims the lives of more than 300 children and young adults under the age of 40 in Michigan. That’s why this February, Governor Rick Snyder and the Michigan Department of Community Health (MDCH) are joining the campaign to celebrate American Heart Month and promote ways to prevent death at a younger age due to cardiac conditions. As part of the efforts, Gov. Snyder proclaimed February 2-6 as Sudden Cardiac Death of the Young (SCDY) Awareness Week.

Click here to read the entire press release!


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Small Hearts. Big Challenges.

Early Detection Leads to Early Prevention

Small hearts can conceal big challenges, especially when it comes to congenital heart defects. It’s one of the most common birth defects in the U.S. and the leading killer of infants with birth defects.

What if we could do something simple to ensure a strong start for a new life? We can. It is through screening for critical congenital heart defects using pulse oximetry testing.

What is pulse oximetry screening? It is a simple test that helps spot heart defects in newborns. This test is both quick and painless, but more importantly, it saves lives. Before a baby leaves the hospital, the test helps identify heart defects, potentially saving its life.

Despite this, pulse ox is not required in all states, allowing thousands of parents to take their child home without knowing the condition of his or her heart.

This is where we need help! We need pulse oximetry tests in every state!

Why?  The evidence speaks for itself: Wider use of pulse ox screening could help identify more than 90 percent of heart defects.

And in case you need more convincing: Congenital heart defects (CHD), are the most common birth defect in the U.S. and the leading killer of infants with birth defects. And they cost money: In 2004, hospital costs for all individuals with CHD totaled $2.6 billion.

Over 40 states have already passed laws, or are in the process, requiring newborns to have pulse ox screenings prior to being discharged from the hospital. But we won’t stop until all newborns have access to this lifesaving test!

It’s time to ensure every child has a healthy heart. Help us spread the word and tell your legislator to support pulse oximetry testing for all newborns.

Get involved by signing up today!

Click here to go back the main page.

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Meet Doug Chew!

My name is Doug Chew and I'm a survivor and an advocate for the American Heart Association's "You're the Cure" community. I'm writing a blog about myself and my work as an advocate with the hope that something I say or do will save a life. I'm also hoping that you'll reach out to me about how you can help further our mission to build healthier lives free of heart disease and stroke. There's no better feeling than working with others to make a difference in people's lives. I will share a story about a life that was saved through advocacy, but first let me tell you a little more about myself. 

On Christmas Day of 2007, I was walking around Gray's Lake in Des Moines, ignoring an odd ticking sensation I had felt, when suddenly I grabbed my chest, unable to breathe, and my body went into a fetal position. For the longest minute of my life, I thought this is what it feels like to die. No more hopes or dreams, just this vise-like pressure on my chest. Luckily, after that minute, shallow breaths returned and my hopes and dreams once again had substance. My road to recovery included open heart surgery, and cardiac rehabilitation. One of my nurses was named Ann: she is part of the story.

For the past two years, I have worked with others to pass legislation to require the testing of all newborns for critical congenital heart disease. I have heard mothers speak of heart wrenching battles to save their child's life. I heard pediatric cardiologists speak to the efficacy of a simple, inexpensive test with a pulse oximeter that could detect a defective heart in newborns and allow for immediate, life-saving treatment. I added my presence and my voice whenever asked to urge the quick passage and implementation of this life-saving legislation. We were successful. Lives will be saved. 

And now the rest of my story. A few weeks ago I was working out at my local YMCA which is affiliated with Mercy Health (where I had my open heart surgery and cardiac rehab). For the first time in almost 8 years I saw Ann, who was still working with heart patients, and reintroduced myself. I told her of my work with "You're the Cure" and our success with legislation to test for newborn heart defects. She then told me her niece had recently given birth and the newborn was given the pulse ox test. A heart defect was found and the child was able to receive immediate treatment. That is one life that now will have hopes and dreams. I know there will be others.

Well, that's my story! As the Advocacy Team Leader for congressional district 3, I want to know more about each of you. Do you have a personal story that you want to share? Do you want to get more involved with our efforts to create a more heart-healthy Iowa? We welcome people who share our passion to make a difference. Let me know. I'd love to chat with you about ways you can get involved. You can reach me at

I look forward to working with you in the upcoming legislative session and beyond. Together we make a difference!

Thank you for your time,

Doug Chew

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The Bass Family, Hattiesburg: Pulse Ox Matters


Written by Amy Bass, Abby's mother

After a very difficult and unpromising pregnancy, by the grace of God, my daughter was born on February 9, 2004. We were told for months that she wouldn’t survive the pregnancy due to complications. However, upon delivery, Abby was placed in the well-baby nursery. We were on top of the world! A very grim pregnancy ended with a seemingly healthy baby girl, until the following morning. The doctor entered my hospital room, sat on the foot of my bed, and delivered the most devastating news any parent could hear. My tiny baby girl was diagnosed with coarctation of the aorta, a congenital heart defect. Due to the results of a pulse oximetry screening, additional testing was ordered that revealed her heart defect. Had the doctor not ordered this screening, Abby’s heart defect would’ve been undiagnosed which could have been fatal. It breaks my heart to think of all the undiagnosed heart defects that result in the loss of a life when a simple non-invasive screening could be done on every infant and would result in saving many lives.

Abby required open heart surgery when she was only four days old. The day after her surgery, Abby coded. The hospital staff were able to perform CPR directly on Abby's heart due to her chest being left open after surgery. She was then placed on a machine called ECMO, which literally pumped the blood throughout her body giving her time to heal. She remained on ECMO for eight days and then continued on the ventilator for five additional weeks. It was during these days and months that we fully came to understand God's grace. It wasn't until we were completely helpless that we realized how awesome God is. Abby later required a second open heart surgery at 18 months old. Once again, God watched over her and carried us through.

Abby is simply a walking miracle. She is now ten years old and is one of the most loving people you will ever meet. She is so kind hearted, and she has an inspiring love for people. Abby’s presence literally lights up a room. Through her sickness and now in her good health, she has already impacted many lives, including ours. Abby has the best HEART of anyone that we know!

To read more about Abby's story visit:

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Newborn Screenings Now in Effect in TX

Because of the hard work of advocates like you, all newborns in Texas will now be screened for critical congenital heart defects before leaving the hospital!

Starting last week a simple procedure called pulse-oximetry will be performed on all newborns before they leave the hospital. It’s quick and painless, and most importantly, it can save lives. Congenital heart defects are the most common birth defect in the United States, and early detection and treatment are crucial.

Please click here and thank Department of State Health Services Commissioner David Lakey and Health & Human Services Executive Commissioner Kyle Janek for implementing this life-saving law in Texas!

Wider use of pulse-oximetry could help ensure that more than 90% of heart defects are detected. Lives have already been saved as a result of these screenings. Recently in New Jersey a newborn’s life was saved just hours after their law took effect!

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Lily Shields, Mississippi

Lily Shields Waveland, MS

March 12, 2007 was the most terrifying day of Tracy Shields’ life.  She took her newborn daughter, Lily, to the doctor for her two week check-up where the doctor discovered an abnormal heart rhythm.  After an EKG confirmed a problem, the doctor sent Tracy and Lily immediately to emergency room.  Tracy was in a state of panic!

Once Tracy and Lily arrived at the hospital, a Pediatric Cardiologist was waiting for them.  He hooked her up to a monitor and explained that Lily had Supraventricular Tachycardia (SVT), a heart condition where thLily Today: An Active & Healthy 7 Year Olde heart's electrical system doesn't work right, causing the heart to beat very fast.

In order to get Lily’s heart into a normal rhythm, doctors put a Ziploc bag of ice on her face and shocked her back into a normal rhythm. 

“Watching your 4lb baby scream while they held a bag of ice on her face was one of the hardest things I have ever had to do,” said Tracy. “From the ER, we were brought up to the PICU, where we lived for the next two weeks.”

Doctors finally got Lily’s heart into a normal rhythm that was controlled by medication for the first year of her life.  When Lily was 8 months old she was able stop taking the medications.  She had thankfully outgrown the SVT.  She is still checked yearly, but is now a healthy, active seven year old.  

Lily’s heart defect, as well as those of countless other Mississippi newborns, could most likely have been detected right after birth, had she been given a pulse oximetry screening.  

The American Heart Association is working to have pulse oximetry screening added to the Newborn Screening Panel for all babies born in Mississippi.  This would require pulse oximetry screening of all newborns for congenital heart defects.  Congenital heart defects are the number one killer of infants with birth defects. 

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