Having a Heart Condition Doesn’t Have to Hold You Back!

By Annette Pinder

Amanda and Greg Baumler were thrilled to know they were having a girl after a 20-week ultrasound. But, a few hours later, they found themselves at Pediatric Cardiology of WNY, where Dr. Joseph Orie told them that their unborn baby had a Congenital Heart Defect (CHD) called Tricuspid Atresia, Hypoplastic Right Heart Syndrome, and the baby’s right heart ventricle was so small, it couldn’t do its job. After constant monitoring, Evie was born on October 14, 2011, and spent three days in the NICU before coming home. “You’d never even know anything was wrong. She was beautiful and seemed perfectly normal,” says Amanda.

Without any pediatric cardiac surgeons in Buffalo, Evie saw Dr. George Alferis at Strong Memorial Hospital Golisano Children’s Center, where they were told that Evie was already in heart failure and required immediate surgery. Amanda says, “Two days later, we handed our three-week-old baby to a surgical team to undergo a six- to eight-hour procedure, not knowing if we would ever get to hold her again. It was the most difficult experience of our lives.”

The surgery helped Evie’s small heart valve grow bigger, work on its own, and prepare her for her next surgery. Over the next eight years, she had frequent doctor and emergency room visits due to tachycardia (heart beating too quickly), and underwent countless procedures and surgeries. Her final surgery took place in May 2019 at Boston Children’s Hospital. “We were so fortunate to have the number one pediatric cardiac surgeon in the U.S. agree to take Evie as his patient,” says Amanda. The physician, Pedro J. del Nido, MD, chairs the Department of Cardiac Surgery at Boston Children’s Hospital, and is a professor at Harvard Medical School.

The surgery was a complete success, which means that Evie can look forward to a full life without further surgeries. She continues to see Dr. Orie, as all pediatric cardiology patients must be seen by a pediatric cardiologist for as long as they live, even to age 100! The Baumlers love Dr. Orie, and tell him that he can never retire. Meanwhile, Dr. Orie says he is thrilled when he sees how Evie is thriving.

The Baumlers are very busy lately, with both Evie’s brother Luke, who is in travel hockey, and Evie, whose activities also take them to various competitions outside of Western New York. Evie is in middle school, where her favorite subject is math, and she also recently wrote a short story that was published. She takes acro and contemporary dance with her friend Maddie, with whom she will be performing a duet for an upcoming recital. She is also involved in competitive cheerleading with her friend Sophia, and loves doing flips and back handsprings. When she isn’t busy with school, dance, and cheerleading, she is a normal kid who loves spending time with friends, especially Sophia. She and Sophia are inseparable, and enjoy shopping, going to Starbucks, drinking Bubble Tea, working on different dance routines, and experimenting with hair and makeup.

“Best of all, the past has taken a back seat to simply enjoying life with two happy healthy kids,” says Amanda. Most recently, Evie’s competitive cheerleading took them to New Jersey and Maryland, and they look forward a competition in Tennessee, where they will visit Nashville. The family has also been enjoying annual trips to the Outer Banks, where they stay at a house on the ocean, and wake up to horses roaming the beach. “It’s wonderful to spend a relaxing week away from everything,” says Amanda.

“Watching our daughter thrive is nothing short of a miracle. After everything she’s been through, the surgeries, challenges, and uncertainty, seeing her out there doing what she loves, without her heart holding her back, is overwhelming, in the best way. We will never forget the days when we worried about her future, and are so happy to now be able to cheer her on as she dances on stage, competes in cheerleading, excels in school and extracurricular activities, and lives her life to the fullest. It’s a reminder to us every day that resilience and hope can lead to incredible things,” say Amanda and Greg.

Despite moving on to enjoy everything in her life, Evie makes a practice of celebrating her annual “surgiversary.” She says, “I want other kids with heart conditions to know that they can still dream big and do anything they want to do! Having a heart condition doesn’t have to hold them back.”