Claire's Story
When Claire and her twin sister Harper were born at just 31 weeks old, Claire weighed 3 lbs., 1 oz. and soon dropped under 3 lbs. for a while. Not only was she born small, but she was also born with a type of congenital heart disease called double outlet right ventricle – a condition that occurs once in every 6,000 to 10,000 births, when the aorta and the pulmonary artery connect to the heart’s ventricle. Claire’s lungs were receiving too much blood flow and she was in heart failure.
It was very important to protect Claire’s other organs and prevent any additional complications so her body would get stronger before major surgery on her heart. Due to her small size, doctors had to perform an initial surgery that banded the lung vessels to control blood flow to the heart, giving her the time she needed to keep growing before a second corrective operation. Claire’s mother credits this approach, and Children’s National cardiac surgeons, with saving her daughter’s life.
Claire’s mom, Corey, sent a note of gratitude to the team to thank them after “all the craziness and emotional rollercoaster” they experienced during Claire’s months long hospitalization.
“You are not only our hero, but a hero to everyone who knows and loves Claire,” she wrote. “She is doing great, by the way. I thought I would share some pictures. Thank you isn’t good enough, but I have no other words, so thank you from the bottoms of our hearts.”
Dozens of Children’s National team members cared for Claire in the Cardiac Intensive Care Unit and Neonatal Intensive Care Unit from before surgery through her recovery and eventual discharge home. A few months after she went home, Claire had an outpatient checkup where the team noted that she is doing amazing. At the time, she had almost caught up to her twin sister in growth and development, and did not need any heart medications.
Mom Corey said Claire loves baths, walks and playing with both her twin and her big brother, and her dog, “who gives her kisses all the time.”
“To all the parents going through the long, scary and seemingly never-ending hospital journey with their warrior, our heart goes out to you,” she commented on social media. “You are so strong.”
Families facing a diagnosis like Claire’s can depend on Children’s National for care. The team uses their vast experience to help guide families through any and all therapies a child with congenital heart disease may need.
