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Joye Mullis

Joye Mullis, Mid-Atlantic Affiliate

As with all children, my son’s story began well before his birth.  I had a fairly easy pregnancy, tainted by a couple of scares early on, but then all appeared well at my 20-week ultrasound. 

I was healthy.  Baby was healthy.  Life was good.

At 28 weeks, I had a second ultrasound to check on the baby’s growth and that sent my husband, Jeramie, and me into a fast-moving downward spiral of more ultrasounds, stress tests, and worries.  By the time our son, Ethan, was born on March 8th, 2009, I’d had a total of five ultrasounds, all attempting to diagnose what would be two birth defects – one urological in nature and one orthopedic.

“But...” an OB assured us, “...all of his major organs are healthy and strong!”

However, about eight hours after Ethan’s birth we learned that the doctor was not completely right.  After struggling to nurse and being an overall quiet newborn - two major red flags that weren’t apparent to us first-time parents - it was discovered that Ethan had also been born with a critical congenital heart defect known as Pulmonary Atresia.

My post-partum nurse was bringing Ethan back to our room from his newborn screening when she noticed that “he just didn’t look right”.  She wheeled him back into the nursery, hooked him up to a pulse oximeter, and found that his oxygen saturation level was in the mid-60s.  That discovery began a flurry of activity, unbeknownst to us, which culminated in someone coming to our room hours later to tell us about the broken heart of our brand new son.

Ethan was rushed to Duke University Medical Center in Durham, North Carolina where he stayed for a total of nine and a half weeks, and where he underwent his first open-heart surgery at just three days old.  He had a handful of surgeries during that time – one of which was to implant a permanent pacemaker – and he also survived full cardiac and pulmonary arrest.

Over five and a half years, and three open heart surgeries later, Ethan is now thriving! His story is that of strength and resilience.  It's a story about rising above the brokenness and turning something so tragic into something so beautiful. It has taken a lot of work to get Ethan where he is today, and it all began with an observant nurse and a sticky light.  One simple test saved my son’s life and could do the same for countless others.

I’ve been known to say that the diagnosis of Ethan’s heart defect didn’t just break one heart – it broke three.  While Pulse Ox screening can’t take away the heartache of surgeries and complications, it can be the start of a lifetime of success for a baby born with a congenital heart defect.  It was for Ethan, and every baby born in North Carolina deserves that same start. 

   

 

 

 

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Remembering the Heart of a Friend

Last week, NC said good-bye to freshman lawmaker, Representative Jim Fulghum (R-Wake).  He passed away on July 19th after a short battle with cancer, at the age of 70.  Representative Fulghum was a retired neurosurgeon and his medical experience was a true asset to the NC General Assembly. 

During his short time in the General Assembly, Representative Fulghum was a champion for health issues.  The first legislation that he sponsored was a top priority for the American Heart Association, HB 105: Require Pulse Oximetry Newborn Screening companion bill to SB 98, which was signed into law on May 8, 2013.   He was also the lead sponsor for HB 827: Designate Primary Stroke Centers companion bill to SB 456 which was also signed by the Governor on the same day as the pulse oximetry screening law.  In addition, Representative Fulghum worked closely with tobacco control advocates both in 2013 and 2014 to ensure that e-cigarette/vapor products legislation defined these new products as a tobacco product, ensuring that these products would be included in NC’s tobacco-free policies, especially in our schools.

The NC AHA Advocacy Coordinating Committee recognized Representative Jim Fulghum for his commitment to strong public health policies of importance to the AHA on December 14, 2013.  Committee member, Peg O’Connell presented him with the NC AHA’s Heart of a Friend Award.  We all were looking forward to continuing our work with Representative Fulghum for years to come. 

“I can hardly believe that he has left us,” said Betsy Vetter, Sr. Government Relations Director.  “Representative Fulghum quickly distinguished himself as a true leader in the legislature.  It was such a pleasure to work with him on issues.  He was very thoughtful and knowledgeable.  North Carolina will miss him greatly.”

The AHA extends our heartfelt sympathies to the Fulghum family.  We have lost a health-hero. 

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Look At All We've Done

In the hustle and bustle of life, it seems there is always something that needs our attention.  Maybe it’s a lunch appointment, a meeting after work – did you remember to call your mom to wish her a happy birthday?

With so many things monopolizing our time, it begs the question: “Why do we do what we do?”  How do we choose to prioritize what gets our few free moments?  As a You’re The Cure Advocate, why do you choose to align yourself with our mission?  Do you know all that we have accomplished?

Today, we are bragging on you. Each action you have taken: every email you’ve sent to your lawmakers, every meeting you’ve attended has helped propel forward many vital pieces of legislation.  We want to tell how you’ve shaped our Mid-Atlantic Affiliate over the past few years.

Maryland:
2012 Legislative Session: tax on small cigars and all smokeless products was raised. Legislation was also passed to require insurance carriers to cover and reimburse healthcare providers for services delivered through telemedicine.
2013 Legislative Session: hospitals in MD are required to test newborns for critical congenital heart defects with pulse oximetry before they are discharged from the hospital. 
Thank you.

North Carolina:
2012 Legislative Session: required all high school seniors to be proficient in CPR in order to graduate high school.  In addition, a total of $2.7 million in non-recurring funding was secured for tobacco cessation and prevention programs. 
2013 Legislative Session: hospitals in NC are required to test newborns for critical congenital heart defects with pulse oximetry before they are discharged from the hospital.   Also signed into law was a policy that ensures designation of Primary Stroke Centers - ensuring stroke patients receive appropriate & timely care. 
Thank you.

South Carolina:
2012 Legislative Session: advocates were able to preserve $5 million for the Smoking Prevention and Cessation Trust Fund. 
2013 Legislative Session: hospitals in SC are required to test newborns for critical congenital heart defects with pulse oximetry before they are discharged from the hospital. Additionally, the Senate passed legislation requiring all high school seniors to be proficient in CPR in order to graduate high school.  This legislation is headed to the House of Representatives, and our SC advocates will be vital in ensuring this becomes law.
Thank you.

Virginia:
2012 Legislative Session: Governor McDonnell issued Executive Directive 4, developing an implementation plan for pulse oximetry tests in hospitals. The House also required the Board of Education to develop PE guidelines for public elementary and middle schools.
2013 Legislative Session: Gwyneth’s Law was signed into law.  All high school students will be required to achieve proficiency in CPR for graduation – and all teachers must be proficient in order to achieve their licensure.  The state budget allocated $400,000 for 12-lead ECG’s for EMS, which helps to diagnose the most severe type of heart attack.
Thank you.

Washington, DC:
2012 Legislative Session: the DC City Council allocated $495,000 for tobacco control programs within the Department of Health.
2013 Legislative Session: the DC Telehealth Reimbursement Act of 2013 requires all payers to reimburse services rendered by telemedicine.
Thank you.

Advocates are driving more policies in the 2014 sessions!  Some say “It takes a village to raise a child.”  With You’re The Cure, it “takes a network to make a difference.” Each and every one of you has made a difference.

Thank you for giving your heart.

 

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Jodi Lemacks

Jodi Lemacks, Virginia

In June of 2003, my third child, Joshua, was born via c-section.  Diagnosed with a Critical Congenital Birth Defect (CCHD) before birth, he was immediately whisked away to the hospital next door for his first of three open heart surgeries, without me even getting a glimpse of him.  The first time I saw Joshua the next day, it was hard to see the baby beneath the tubes and wires hooked up to him.  It felt surreal, like I couldn’t possibly be looking at my own baby. 

Joshua managed to survive the first surgery, but then struggled against infections and other complications for almost two months.  My husband and I, along with Joshua’s brothers and other relatives, stood by Joshua’s crib praying that he would make it, but mostly praying that this little guy would not suffer. Then one day, Joshua turned a corner—truly a miracle—and we finally got to bring Joshua home in August; he has made it through two more open heart surgeries since then.  Today, he is a happy, healthy nine-year old who loves baseball, golf, his family and life.

This scenario would have been entirely different if Joshua had not been screened for CCHD (in his case, before birth).  Working for Mended Little Hearts, a national non-profit that helps families who have children with heart defects, I know too well the devastating consequences of lack of screening for CCHD.  I get emails, and sometimes calls, from parents of babies who died or coded because their heart defect was not caught in time, and it breaks my heart. 

Joshua’s type of heart defect is 100% fatal if not caught—usually within a couple of weeks of life.  About half of the babies with this heart defect are not caught pre-birth, so screening soon after birth becomes vital and life-saving.  There are about 10,000 babies each year born with critical congenital heart defects that, like Joshua’s, can be caught through screening.  The sooner a baby is screened, the more likely the baby will get life-saving care.

Parents are looking to their hospitals and their states to help them.  Pulse oximetry screening, now mandatory in some states, is simple, non-invasive and inexpensive.   (For more information on pulse oximetry screening in states visit www.pulseoxadvocacy.org.  This website was created by Kristine Brite McCormick who lost her baby, Cora, due to lack of screening.)  Most states already conduct newborn screening, and many are working to include pulse oximetry screening in their standard newborn screening panel.   In New Jersey, such a law saved at least one life within 24-hours of implementation.  

As of April 2014, in AHA's Mid-Atlantic Affiliate, You're the Cure advocates and Mended Little Hearts have helped make pulse oximetry screening for all newborns the standard of care in MD, VA, NC, and SC, and I am proud to have been able to support the process.

 

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Celebrating Big Win for Babies

These are exciting times in VA!  Governor McAuliffe has signed House Bill 387 and Senate Bill 183 into law, and pulse oximetry screening of all newborns will soon be the standard of care in Virginia.  This new statewide policy will guarantee that each newborn in Virginia is tested for Critical Congenital Heart Defects (CCHD), and that the testing is done in a consistent, scientifically proven manner.

Newborns whose CCHDs go undetected can be discharged from the hospital before their condition is identified and treated. These infants are at risk for serious complications within the first few days or weeks of life, and often require emergency care.

New research suggests that when all infants are screened using pulse oximetry in conjunction with routine practices, CCHD can be detected in over 90% of babies. When identified, these babies can be seen by specialists and receive care to prevent death or disability.

Please take a moment to thank the Commonwealth’s elected officials for unanimously acting to help to save the lives and protect the health of all newborns in Virginia.

See a lucky baby and his mom in the news about this issue on CBS affiliate WUSA9 Feb 21, 2014. 

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Heart of a Friend

At our mid-December Advocacy Committee meeting, I got to do one of the best things about being a volunteer with the American Heart Association Advocacy Committee.  I was privileged to present the AHA "Heart of a Friend" Award to North Carolina State Representative Jim Fulghum.  Dr. Fulghum is a freshman legislator from Wake County and although he is new to the legislative process, he has become a strong advocate for a variety of public health issues and has been a real leader for issues that are important to the American Heart Association.

Dr. Fulghum was the lead sponsor on the House Legislation that required pulse oximetry screening for all newborns in North Carolina. This law requires that babies be screened and is the best way to determine if a newborn has a critical congenital heart defect.  If discovered early, these babies can get the proper medical care before they leave the hospital.  As hard as it is to believe, there was opposition to this bill and I credit Dr. Fulghum and his Senate colleague Andrew Brock for their courage in standing up to the opponents and doing what is best for North Carolina's babies.

In December, we also recognized Dr. Fulghum for his sponsorship of the legislation to designate primary stroke centers, so patients and EMS will know the best place to take someone who is suffering a stroke.  This is a major step forward in improving our stroke systems of care.

And then finally, and my personal favorite, we recognized Dr. Fulghum for his leadership in taking a bad bill being pushed by the tobacco industry to exempt e-cigarettes from the state's tobacco and smoke-free laws and regulations and turn it in to a good bill that made North Carolina one of a handful of states prohibiting the sale of e-cigarettes to minors.

Dr. Fulghum is truly a FRIEND to the American Heart Association and we all look forward to working with him on important health issues for years to come!

 

**Many thanks to Peg O’Connell for writing this post!  Peg is an active You’re the Cure member and serves on our Advocacy Coordinating Committee.**

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Rep. Glazier Presented with “Heart of a Champion” Award

Last week the American Heart Association honored Rep. Rick Glazier with the North Carolina Heart of a Champion Award, the highest honor bestowed by the American Heart Association on a legislator in North Carolina. Representative Glazier has been a consistent champion of all of the Heart Association’s legislative priorities in his time in the legislature. In 2009, he was one of the co-sponsors on HB2, which made all bars and restaurants smoke-free. When asked why he was supportive of the smoke-free law in 2009, Glazier responded, “We'd seen the health data that existed throughout the state. North Carolina has one of the highest smoke-related illness rates in the country, with about $280 million in direct costs from second-hand smoke and somewhere close to $2 billion in direct health costs from smoking in general. And the incredible effect it was having on the healthcare system and the economy were big indicators.”

During the last legislative session, he quietly worked behind the scenes in a bi-partisan manner to amend a bill related to e-cigarettes to insure they would be treated and regulated in a similar manner to other tobacco products. Rep. Glazier has also been a champion of other AHA priorities related to pulse oximetry testing and stroke centers in North Carolina. When Peg O’Connell gave Rep. Glazier the award last week, she stated, “You have been a supporter of literally every AHA priority over the years.”  Rep. Glazier was excited to receive his award and later told Betsy, "I am honored to receive the North Carolina AHA Heart of a Champion Award. The work of the American Heart Association in North Carolina has now saved thousands of lives and continues to leave a lasting legacy of better health for us all."

We can’t think of a better person to honor than Rep. Glazier for his tireless advocacy to make North Carolina a healthier place. 

 

Many thanks to Lee Storrow, You’re the Cure advocate, for writing this post!

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“Heart of a Friend” Award and Eastern NC Advocacy Meeting

Recently, NC AHA Advocacy Coordinating Committee Chair, Yolanda Dickerson and stroke advocate, Marie Welch joined a group of Eastern NC advocates and presented Senator Louis Pate (R-Wayne) with the 2013 NC AHA You’re the Cure “Heart of a Friend” award for his leadership and sponsorship of two bills during the 2013 Legislative Session.  Senator Pate was the lead Senate Sponsor on SB 456: Designate Primary Stroke Centers and was one of the primary sponsors for SB 98: Require Pulse Oximetry Newborn Screening.  Both bills were signed into law in May 2013 by Governor Pat McCrory. 

 “What a wonderful way for advocates to celebrate the passage of this important legislation by thanking the bills’ sponsor.  Senator Pate worked particularly hard on Senate Bill 456 to make sure that the bill was strong, good policy for North Carolina,” said Betsy Vetter, Senior Director of Government Relations. Advocates also had time to ask Senator Pate questions and discuss with him the importance of preventing cardiovascular disease and building healthier lives. 

After visiting with Senator Pate, the advocates rolled up their sleeves and spent some time learning about the issues AHA will be working on in 2014.  Of particular interest to the group were efforts to eliminate food deserts through healthy food financing and healthy corner store initiatives. Several members of the group were familiar with the healthy corner store pilot projects that has taken place in Pitt County and had firsthand experience working with local food distribution. There was a lively discussion about the challenges of ensuring everyone has access to healthy foods. 

Researchers are increasingly finding that there is a lot of truth to that old adage, “You are what you eat.” Along with regular exercise, weight management, and not smoking, a healthy diet is shown to reduce the risk of cardiovascular disease (CVD), stroke and other chronic diseases and conditions. About one in every five North Carolinians is “food insecure” and will not have access to enough food this year.  Access to affordable and healthy foods is an important component to a healthy diet. The reality is North Carolina has over 171 food deserts across 57 counties, affecting 410,000 residents. 

Advocates in eastern NC took time during their meeting to write messages to Governor McCrory about the importance of eliminating food deserts in our state.  Join their efforts by sending a message to your lawmakers.

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From an ICU Incubator to Washington DC

I'm Joye Mullis. Four and a half years ago, while sitting beside my infant son’s incubator in the Pediatric Cardiac Intensive Care Unit at Duke University Medical Center, I could have never imagined his story playing out quite like it has.  Not only has Ethan endured multiple surgeries and procedures and survived cardiac arrest, but his story has also been a catalyst for change for babies born across our state and country.

The story of Ethan’s heart was one of many heard by state lawmakers here in North Carolina this past spring.  Thanks to the advocacy efforts of so many, the pulse oximetry screening bill was signed into law by Governor McCrory in May! Then, in late September, our family had the incredible opportunity to take Ethan’s story a step further. At the invitation of Senator Kay Hagan, we traveled to Washington D.C., where I testified for the Newborn Screening Saves Lives Reauthorization Act before the U.S. Senate Committee on Heath, Education, Labor, and Pensions.

We all know that comprehensive newborn screening saves lives and that early-intervention is crucial when problems are detected.  Pulse oximetry screening is what helped discover Ethan’s heart defect after his birth and enabled him to receive the life-saving care he needed right away.  His story, and the story of so many other babies like him, is the driving force behind my advocacy efforts today – from North Carolina to Washington, D.C.

It was such a honor to share our family’s journey at the national level and it was an experience that won’t be forgotten.  Gratitude and joy filled my heart as I watched my son, who spent his first few weeks fighting to live, explore our nation’s capital with zest and excitement.  We have many people to thank for his health today, and it all began with a simple test.

Here’s the WWAY Wilmington tv news clip about my testimony:

 

 

 

 

 

 

 

 

 

 

 

 

 

Please consider contacting your state’s Senators and ask that they support the Newborn Screening Saves Lives Reauthorization Act this fall.

 

 

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Policy Win for Babies!

Maryland hospitals will be saving more babies through the use of pulse oximetry screening for newborns because of regulations You’re the Cure helped put in place this session.  What, you say??!!  You don’t remember getting alerts asking you to send letters to your legislators about that! 

That’s because it was regulatory, not legislative, so we did not need to drive constituent requests to the lawmakers.  Instead of going through the legislative process, regulatory policy is crafted and approved by state agencies, generally with input from invested stakeholders, then written into state regulations. 

Final passage of regulations for Maryland’s Newborn Screening Program means that all newborns will be screened for congenital heart defects using pulse oximetry before they leave the birthing facility.  Testing the level of oxygen in a newborn’s blood through this simple screening can help detect serious heart problems that may otherwise go undetected.  This screening is non-invasive, inexpensive, and can save a child’s life.

Congenital heart defects (CHD) are the most common birth defect in the United States and the leading killer of infants with birth defects.  Considering that approximately 1 in every 125 newborns is born with a CHD, you can see this regulation will play an important role in saving the lives of babies.

Although a number of Maryland hospitals have been providing pulse oximetry voluntarily, the regulation will assure that no baby goes home with an undetected CHD.  That’s big news for Maryland babies!

Interested in more detail about regulatory process versus legislative process?  See HERE.

Do you have a story about a baby saved by pulse oximetry screening?  Share it with us HERE! 

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