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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.

Live in VA?  Thank VA legislators for making this happen for our littlest citizens and their families!

 

Juddson Rupp, North Carolina

I didn’t remember anything from my week in the hospital, but when a friend brought in a copy of the six o’clock news from October 27, 2000 I quickly realized that either that was a slow news day or that I was one lucky miracle survivor with an important story to share.

"Being at the right place at the right time and near the right equipment may have been a real life saver for a man working out at the YMCA,” the TV anchor began. Her co-anchor added, "Judd Rupp, not your typical heart attack victim - he's in his 30's and was at the gym.  Thanks to some people who knew exactly what to do, he's alive today."

Reporter Steve Litz brought the story to a close saying: "Two important notes to add- It was difficult identifying Judd Rupp as he was not wearing any kind of I.D.  Everything worked in Rupp's favor at the YMCA because so many know CPR there.  Another note, Juddson Rupp is an employee here at WSOC-TV.  We all wish him well in his recovery."

After getting choked up watching news clips like the one above a decade ago, I knew that internally and externally my life had changed.  I could no longer be a just a private citizen.   I had to share my story publicly for several reasons.  I now strongly believe that being and advocate and sharing your story is an important duty as a survivor.

The American Heart Association approached me to ask if they could use my story for the upcoming Heart Ball.  The Marketing Director told me that sharing my story could help save hundreds, if not thousands of lives through the years.  Then the publicity became a 'no-brainer' for me.  Why wouldn't I help save others by informing people to learn CPR or by encouraging them to purchase AED's and stop cardiovascular disease with added research and funding?

After the initial Heart Ball work in 2001, I was asked to be in a Public Service Announcement (PSA) that ran on Charlotte TV stations and throughout the Carolinas in a commercial also featuring my wife and two children urging people to 'Learn CPR...it can save lives!'  I became the poster boy for the American Heart Association, as my wife had joked.  She also knew that I was honored to do this and practically anything to help AHA grow its cause...and be the cure.

My volunteer time and work became even more empowering after meeting Betsy Vetter in 2004.  She asked me to join You’re the Cure, and become an advocate for AHA.  My initial role had me traveling to Washington, DC and visiting with Federal Legislators on Capitol Hill.  I am proud to say that I have not missed an AHA Federal Lobby Day since.

Since then I have held multiple roles including communications/media chair for the NC AHA Advocacy Coordinating Committee and co-chair of the Smoke-free Mecklenburg Advocacy Committee. I have also been active with Emergency Cardiovascular Care and the Heart Ball, and attended numerous state lobby days at the General Assembly in Raleigh where I share my personal experience with state lawmakers to help them better understand the importance of supporting strong public health policies.

Speaking with countless legislators and their staff to put a face on heart disease, and fight for so many who are not with us anymore is the most empowering reason I do this.  

*On December 14, 2013 Juddson was the recipient of the 2013 Dr. Robert Blackburn Award for Advocacy Excellence which honored all of his advocacy work at the American Heart Association.

Kendra Meiklejohn, Virginia

My husband and I were so excited at the ultrasound to find out the sex of our second child. We had our son with us. We were joking and talking with the tech. She suddenly grew quiet. When the doctor came in and viewed the ultrasound, he was also very quiet. It didn’t really sink in until they told us, “There is something wrong with your baby’s heart.”

They couldn’t elaborate. They made an appointment for a fetal echo. We had to wait and wonder and worry for 4 days until we got her diagnosis. She had tricuspid atresia. One of her valves hadn’t formed so one ventricle didn’t develop. Without surgical intervention, most babies with this defect will not live to their first birthday.

We were terrified and worried, but also hopeful. I began to share her story to educate others. Before this time I didn’t realize that babies could have heart defects, but I learned that 1 in 100 are born with some sort of heart defect. It is the MOST common birth defect.

Iryl (rhymes with spiral) was monitored closely during my pregnancy. A birth plan was put in place for her. We toured the NICU and PICU at our hospital and we were scheduled to meet with the pediatric cardiac surgeon when Iryl decided to come early- at 34 1/2 weeks.

She was born via an emergency c-section.  She had a few other surprises for us, too. She also has sacral agenesis (no sacrum), heterotaxy (means differently arranged and usually effects the heart, intestines and spleen but can affect other visceral organs), asplenic, duodenal atresia (intestinal blockage) malrotation, pulmonary stenosis and atrial septal defect.

Despite all of this, she is amazing. She is currently 22 months and doing really well. We still check her pulse oximetry reading daily. This simple test, “pulse ox,” is what can save newborns with undetected congenital heart defects. The device is like a band aid with a light that measures the oxygen saturation. Most people have oxygen saturation near 100%. If a newborn’s is a lot lower, more testing needs to be done right away to check for critical issues.

This screening test is NON-invasive, it’s cheap and it’s quick. It can save lives. For as long as there are congenital heart defects, parents and the medical community need to do everything they can to save these kids. Pulse ox screening should be provided for every baby before going home from the hospital.