Lauren’s story: Living a fulfilling life as an adult with congenital heart disease

Photo was taken prior to COVID-19. Courtesy of Lauren Bednarz

Living with a chronic illness takes courage, perseverance, acceptance and a positive mindset. For 33-year-old Lauren Bednarz, every time she listens to her heartbeat or looks down at the eight faded scars on her chest, she is reminded of how grateful she is to be alive. Lauren considers herself a congenital heart disease survivor.

At 10 weeks old, Lauren was diagnosed with Tricuspid Atresia and a large Ventricular Septal Defect. Tricuspid Atresia is when the Tricuspid Valve is either abnormally deformed or did not form at all causing the right ventricle to be small or missing. In Lauren’s case, her Tricuspid Valve did not form at all which led her to have a severely Hypoplastic Right Ventricle or no right ventricle at all. Unlike a normal heart that has two ventricles, Lauren only has one. She had her first open heart surgery at 6-months-old. When she turned two, doctors performed a Fontan procedure, which is a type of open heart surgery that redirects blood flow from the pulmonary artery to the lungs without having to pass through the heart.

“Living with congenital heart disease as a child, and now as an adult, has always been normal to me,” Lauren said. “It’s not always easy living with a single ventricle Fontan heart as challenges or bumps in the road happen, but I’ve lived and continue to live a very happy and fulfilling life despite whatever I face. I always tell myself, ‘You can’t control everything that happens to you, but you can control how you deal with the cards you’ve been dealt with, in the best way you can.’

Lauren credits her survivorship to the care she continues to receive at Texas Children’s. Texas Children’s Adult Congenital Heart (ACH) Program provides patients born with congenital heart disease with a seamless transition of care from birth through adulthood, and has helped many patients born with congenital heart disease live longer, healthier lives by revolutionizing the way their conditions are diagnosed and treated. Despite a few bumps in the road – the arrhythmias she developed due to her congenital heart disease have caused her a few issues over the last two years – Lauren is grateful to her cardiologist, Dr. Wilson Lam, and her amazing team of physicians who’ve helped her on this journey.

“Even though I’ve only been a patient here since 2013, Texas Children’s is like a second home to me, and everyone is always so nice and amazing,” Lauren said. “While it may seem a little out of place going to a children’s hospital for my adult follow-up care, I feel comfortable knowing my doctors are trained in both pediatric and adult cardiology. That’s why I know Texas Children’s is the place for me to receive my care.”

Recently, when Lauren learned Texas Children’s opened a first-of-its-kind facility dedicated for adults with congenital heart disease, she was excited and couldn’t wait to see it for herself. The 27,000-square-foot-space, located on the 24th floor of Texas Children’s Lester and Sue Smith Legacy Tower, includes an inpatient unit for all levels of treatment, an outpatient clinic, a cardiac rehab gym and a diagnostics lab – everything a patient like Lauren needs on one floor.

“I think it’s important to have this kind of facility here for so many reasons,” Lauren said. “There are now more adults living with congenital heart disease like myself than kids with congenital heart disease for the first time ever which is amazing. We definitely need a place dedicated for us and our complex needs. I think it’s also exciting to see how far technology has come in the medical world. It gives me and other patients hope for the future.”

While living with congenital heart disease can be challenging at times, one thing that helps Lauren cope with her illness is sharing her personal story with others, being their support system, and being a source of hope for them. She says its special opportunities like this that makes her very happy.

“I have been blessed to meet so many amazing people since being part of the CHD community on and offline for almost 14 years,” Lauren said. “It’s not always easy to live with CHD or in my case, a single ventricle Fontan heart, but I’d like people to know we can live very full, happy lives despite whatever challenges we face. There is lots of hope!”

Click here to read more about Lauren’s journey. Click here to learn more about Texas Children’s Adult Congenital Heart Program.