My mom has loved me from the very moment she knew I was in her belly. One day, during a routine ultrasound, her fetal care team found a single-vessel umbilical cord. This was concerning since my right kidney was found to be missing during previous anatomy scans.

My mom remembers the sonographer looking concerned, telling her that she’d be right back. The next thing she knew, three physicians including her OB/GYN were in the room looking at the monitor with concerned looks of their own. It was at that time that her doctor shared, “the baby has a hole in her heart.”

My mom was quickly referred to a pediatric cardiologist for a fetal echocardiogram and a confirmed diagnosis. Throughout my childhood, I went from doctor to doctor, specialist to specialist, until my family and I fell in love with Nemours Children’s Health, Pensacola. The staff at Nemours have been outstanding for the entire time I have had the opportunity to see them.

Some of my biggest concerns throughout life were rapid shortness of breath when exercising, but now that I have an artificial pulmonary valve, this isn’t so much of an issue.  My family and I tend to exercise caution during flu season, and now COVID. We take preventative and protective measures to limit exposure.

Fellow congenital patients that I’ve met understand how mentally grueling a standard checkup can be, especially as a young person who does not understand the complex nature of these diseases and defects. I view Nemours from a slightly different perspective than my younger peers, as I have aged out of needing a lot of the comfort designed for pediatric patients. But at the end of the day, who says no to watching Star Warsduring an EKG? Not me! As an older patient, I appreciate the efficiency of my visits, perhaps due in part to the fact that I know it is not socially acceptable for someone of my age to take the stickers off. No regrets. Overall, there is a comforting and welcoming environment for patients and their families and that starts with the staff first!

As I set my eyes on what’s next in my journey, I look forward to continuing my education in economics and hope to apply this to a field that is related to public health. As I have grown older, this has become a passion for me as I have spent all my life navigating health systems. Outside of education, my hobbies include playing the bass, walking my dog, and watching sports like ice hockey and Formula 1 racing. Treatment has come a long way since I was born and truth be told, the only thing that I feel completely limited in nowadays is riding rollercoasters. Above all, I want to show younger patients that a CHD diagnosis does not limit them from having a fulfilling life that makes them happy.

For those who are newly diagnosed, it’s okay to get a second opinion and meet with different specialists. The team at Nemours will be a part of your life for a long time and you want to make sure you have the right team for you.  Find your tribe, too.  We found a fantastic support group based in Connecticut called Little Hearts. They hold an annual picnic for heart families and offer opportunities to connect with heart parents and families.  In Florida, the American Heart Association has a program called American Heart Heroes that is another similar support resource. And once your child is old enough to attend, Camp Boggy Creek is an amazing outlet for your child to be around other heart kids for a traditional summer camp experience!

A note from Dr. Mary Mehta, pediatric cardiologist VP & Chief Medical Officer of Nemours Children’s Health, Pensacola: “One of my most cherished memories of Natalie was watching her shine at the American Heart Association’s Heart Ball a few years back. Seeing her there, fully present and supportive of her mom, Inger, and the AHA’s mission, was truly special. It felt like a full-circle moment, knowing how dedicated Inger is to supporting her child through their family’s congenital heart disease journey and seeing the thoughtful young adult that Natalie has grown up to be. I’m certain that Natalie and Inger’s stories will inspire both young adults with CHD and their supportive families. Our Pensacola community is fortunate to have their compassion and commitment to helping others.”

The post A Hole in the Heart: Natalie’s CHD Journey appeared first on Nemours Blog.