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Forging Hearts of Iron: Showing the Possible for People with Congenital Heart Defects

December 13, 2013

Originally published Feb. 6, 2012

To watch Eva run around with her siblings, you would never guess that she is anything but a regular four year old. She plays with her younger sister and keeps up with her older brother and sister. She is strong, goofy and full of energy. Her infectious personality gives no clues to the struggles she has overcome from her very first moments on Earth. Eva was born Nov. 30, 2007 with a congenital heart defect called hypoplastic left heart syndrome (HLHS).  She has since had five open heart surgery procedures. Her final procedure was in April 2010 and is meant to be the last of the series.

Eva’s condition was not found in her prenatal ultrasounds and at the hospital when she was born. Her mother stresses the importance of educating staff about conditions like Eva’s. “Early diagnosis is so important,” she explained. “Conditions like Eva’s can be prenatally diagnosed. Much teaching needs to go to the ultrasound technicians and OB/GYNs to catch them early.”

After Eva’s first surgery, her heart stopped and she had to be placed on a machine called ECMO, which is a kid-sized, heart, lung bypass machine that would allow her heart to rest and gain strength. When children are placed on ECMO, their chance for survival is 50 percent.

“Eva is alive because she had access to that ECMO machine,” explains her mother. “Machines like ECMO are only possible through donations to hospitals and are specifically donated to those departments. If the machines had been in use by other children when Eva needed it, she would have died. Eva is a miracle. Her name means ‘giver of life’ and she makes us appreciate the gift of life so much more.”

Eva is not alone in her fight. Congenital heart defects are the most common birth defect, with 40,000 babies in the United States born with them each year. That means that one out of every 100 babies in the United States is born with a congenital heart defect. 

Congenital Heart Defect Awareness week is February 7-14 and exists to help educate the public about congenital heart defects.  The causes of congenital heart defects among most babies are unknown.  Sometimes a viral infection or heredity causes the condition and some congenital heart defects are the result of too much alcohol or drug use during pregnancy.

According to the CDC, treatment for congenital heart defects depends on the type and severity of the defect. Some might get better by themselves; however, others might need one or more surgeries to repair the problem. Some also can be treated without surgery with a procedure called cardiac catheterization. A long tube, called a catheter, is threaded through the blood vessels into the heart where a doctor can take measurements, do tests, or repair the problem.

As medical care and treatment have advanced, infants with congenital heart defects are living longer and healthier lives.  “We are so thankful for the medical technologies and capabilities that surround us today,” said Elizabeth Gaylor, M.P.H., Project Analyst in the Division of Violence Prevention at the CDC, Eva’s aunt. 

In fact, many infants with congenital heart defects are now are living into adulthood. It is estimated that nearly one million adults in the United States are living with a congenital heart defect. One such survivor, David Watkins, started an endurance racing team called Ironheart Racing after undergoing open heart surgery to replace his aortic valve in 2005. Watkins is a triathlete and discovered, after finishing a sprint distance race and ending up in the hospital with an abnormal arrhythmia, he was born missing a third of his aorta — instead of the three cusps that most of us have, he only had two. “They told me that there was more of a chance that I would die than live,” said Watkins.

Surgery was a 17-hour day that included two trips to the operating table during which, his heart was without a beat for five minutes.  He recovered, and just over a year later, found himself at the starting line of Ironman Coeur d’alene. A triathlon consisting of a 2.4 mile swim, 112 mile bike, and a 26.2 mile run.  Medtronic, the company that produced the artificial valve that has saved his life, sponsored him.

“I was the last one to finish that day, but it took me over the 17-hour cutoff time,” said Watkins.  “The goal was to teach my children that no matter the circumstances, no matter what others may say, if you believe in yourself, work hard and stay focused, you can accomplish amazing things,” said Watkins.

In 2010, Watkins set back out with a new goal, to not only finish an Ironman, but do so under the 17 hour cutoff time. “My mission was to finish what was started and teach others that, if you fall short of your goals, regroup, reassess, refocus and try again,” said Watkins. This time Watkins finished in 15 hours, five minutes and four seconds. 

Ironheart Racing, which started out mainly as an endurance racing team, has since grown into Ironheart Group—an organization with a mission to support cardiac charities worldwide by raising awareness and funds via active lifestyles. The goal of the Ironheart Group is to inspire others and motivate individuals, organizations and communities to live a heart healthy life—all while recognizing the most common birth defect - congenital heart defects.

“We hope to make a difference by promoting non-profit organizations that support research and programs that benefit cardiac patients and their families,” said Watkins. “We participate in everything from 5K runs to Ironman and Ultra-marathons to support these wonderful groups.” The group’s logo is a pig with wings—a play on the saying “when pigs fly” –a popular response to Watkins when he said he’d finish an Ironman.

Ironheart Group’s racing team is now divided into divisions: running, cycling, triathlon, Jr. racing team and elite.  The team is made up of racers from across the country and globe. Many have gone through similar cardiac issues/surgeries and use endurance sports as a way to stay healthy and inspire others. Some have simply joined to help spread awareness of congenital heart disease and healthy heart living through exercise and competition. The team is now made up of 200 athletes in 43 states and six countries.

Gaylor, who, along with PHWEEK editor, Kimberly Stringer, joined the Ironheart Racing team’s triathlon division to demonstrate to Eva that nothing is out of her reach. “I want Eva to see that she can still be active and a part of physical activity whether it be triathlon, dance or whatever she chooses,” said Gaylor. “And it's even more important for those with heart defects to stay active, with supervision of their physicians of course, so that it will prolong their life and quality of life.”

“Being active in triathlon is a great way to live a heart-healthy lifestyle,” said Stringer. “ The fact that many of our Ironheart teammates have overcome heart defects and are accomplishing amazing feats shows that nothing is out of someone’s reach. It is incredible and inspiring to be on a team with them.”

For more information on congenital heart defects, visit http://tchin.org/aware/

For more information on Ironheart Racing, visit http://ironheartgroup.com/ andhttp://ironheartracing.com/