February is Heart Awareness Month, and throughout the month we have met so many Extraordinary TinySuperheroes who are fighting Congenital Heart Defect. Congenital Heart Defect (CHD) is the most common birth defect worldwide and affects 40,000 babies in the United States each year. We have lots of stories to share with you, but we wanted to first introduce you to Super Owen – an advocate for CHD awareness at just 11 months old!
This stud is Super Owen. When his parents chose his name, they didn’t know its meaning, but Owen means Young Fighter, and this TinySuperhero has definitely lived up to his name.
Owen’s mom and dad were really excited when they found out they were pregnant, and then really scared when red flags arose during their 20 week anatomy ultrasound. The ultrasound revealed a Single Umbilical Artery (SUA). Usually the umbilical cord has two arteries and one vein, but in these cases there is only one artery. About 25% of pregnancies with SUA are associated with heart and/or chromosomal defects. Many weeks and ultrasounds later, they found out that Owen was a part of this 25% and had some Congenital Heart Defects.
Owen was born on April 2, 2012. By birth he had already proven that he was indeed a young fighter and stubborn! 39 hours and a C Section later, Super Owen came into our world!
Owen had to go straight into the NICU because they had a good idea of what was going on with his heart. He had Type 2 Tricuspid Atresia, Transposition of the Great Arteries, and a hypoplastic right heart. In layman’s terms here’s what Owen was dealing with: First, no blood was flowing through the tricuspid valve of his heart, causing his right ventricle to be severely underdeveloped. Transposition of the Great Arteries means that the aorta and pulmonary artery were switched, something that would need to be corrected by surgery right away. And finally, the entire right side of Owen’s heart was underdeveloped, or hypoplastic.
Super Owen endured his first open heart surgery when he was three days old. This first procedure, called the Norwood, placed a shunt between his aorta and pulmonary artery and disconnected the pulmonary artery from his heart. After surgery, Owen spent his first month and a half in the hospital recovering.
Then, in August, Owen had his second open heart surgery called the Glenn Procedure. This 6-hour surgery helps his heart compensate for the underdeveloped right ventricle, and allows for more blood flow to the lungs. Again, Super Owen was a champ and went home after just 5 days!
What Super Owen is missing on the right side of his heart, he has made up for in his personality! This little man is a ham! One of his super powers is his gorgeous hair – he’s practically irresistible! And Super Owen is on the go! He’s crawling, rolling, dancing, standing, drinking from a sippy cup, loving Cheerios, and always nearby his doggy sidekick, Bear.
Super Owen’s fight isn’t over. There is likely another surgery ahead of him, and he has to be especially careful not to get sick. He is also struggling with a rash on his body that they’ve yet to find the source of. But you won’t see any of these things affecting this TinySuperhero’s smile!
Owen’s greatest super power is that at the young age of 11 months, he understands that he is not alone in fighting Congenital Heart Defects. He knows that while he’s been consistently winning his battles, 4,000 other Extraordinary TinySuperheroes with CHD won’t make it to their first birthday this year. While it occurs in nearly 1 out of 100 American births, there is little funding for research, no known cause, and no cure.
Owen seeks to educate people about CHD (again, the most prominent birth defect in the world!!!) so that all of the Extraordinary TinySuperheroes born with CHD in the future have a bigger army on their side. During February, Owen even found a new friend with CHD everyday and shared their story on his Facebook page!
We feel so blessed to empower this Extraordinary TinySuperhero, though in reality he is empowering us. Continue to be inspired by Super Owen though his blog, and Like him on his Facebook Page!