Coinciding with Valentine’s Day, this week is Congenital Heart Defects Awareness Week. Perhaps in years past, that one might have slipped by without giving it too much thought. But like anything else, once a disease has struck one’s family, the impact hits home. My three-and-a-half-year-old great-nephew Rush Timothy Perine has curly hair, beautiful blue eyes and an infectious smile. He attends preschool, has a boatload of cousins and he loves music, outdoor play, his baby sister Willow, “Monsters University” and hotdog buns with ketchup – hold the wiener, please.

 

To look at Rush, one would never know he’s had two open-heart surgeries to repair his little heart – one at four months and the other at two years. Rush was born with several congenital heart defects. He had a Double Outlet Right Ventricle, meaning essentially that his pulmonary artery and aorta were raised from the right ventricle. A related condition, he also had a hole in the tissue wall that separates the right and left ventricle. Rush was only three days old when his parents Adam and Tara Perine were told about his condition. It hit hard and was a complete surprise. Then there was the wait game. Rush had to grow bigger and stronger before surgery could be done. When that time came, it was discovered that he also had a defect in his coronary artery. Though there were some complications, both surgeries at WVU Children's Hospital have been successful. Rush handled it all like a champ. So did his parents. I must tell you that I have learned much about life, faith in God and an attitude of gratitude from these two “kids.”

 

Tara and Adam want other young parents – and everyone - to be aware of the possibility of congenital heart defects – the leading cause of birth defect-related deaths worldwide. One in every 125 U.S. babies are born with a CH – basically meaning that their hearts do not perform properly. That’s 40,000 babies, many of whom are not diagnosed at birth – or at all. Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and childhood-onset heart disease. Early detection is critical to the successful treatment of CHDs and in the past 25 years, advances in treatments including surgery, medicine, artificial valves and pacemakers - have made strides. Some heart defects can be detected by a routine ultrasound, but the most effective prenatal test is an echocardiogram. According to the Cleveland Clinic Web site, CHDs might be indicated by shortness of breath or intolerance to exercise. That site provides much useful information, including how to find a doctor if the disease is suspected or diagnosed.

 

The American Heart Association Web site is a great resource with much information about CHD, including stats, treatments, resources and links to stories. Specific information on the diagnoses of CHD can be found here. To further understanding and research, adults with congenital heart defects can take part in a survey. That simple act could go a long way in helping others in the future. Ask your genetic counselor about research studies available. 

 

These days, Congenital Heart Defects Awareness Week has a triple meaning: It’s a time to think about – and give thanks for – the strides in research and the amazing treatments available for children and adults with CHD. I know how thankful the entire Perine family is. It’s also an opportunity to remember that symptoms being experienced by children and adults could be linked to such a defect. That’s something to consider, for sure. And finally, it’s a reminder to me that young parents like Tara and Adam can affect many with their open hearts, open minds and deep faith in God to accept, protect and repair.

 

Tara says Rush is a typical toddler with an atypical heart. I’ll leave you with a few words beautifully written by this young mother. You can read her full story here. 

 

“Today he looks like any other rambunctious (almost) 4-year-old boy, all except for the tell-tale ‘zipper’ scar on his chest. He will forever be a ‘heart’ patient and have regular check-ups from his pediatric cardiologist. His heart is still very different (physiologically) from a normal heart, but has been repaired to function properly. We have been told that future heart surgeries for Rush are a possibility; however our family holds onto hope that God (through Rush’s medical team*) has healed him.”

 

Adam, Tara and their children live here in Bridgeport. The couple said the medical team at WVU Children's Hospital has, throughout their entire journey, been amazing. 

 

Top two and cover photos courtesy of Holly Hustead Photography