By University of Iowa Stead Family Children’s Hospital
IOWA CITY, Iowa — Quick, shallow breaths aren’t typical in a healthy newborn. Luckily, Drew Steffen’s parents, Elly and Brad, noticed their son’s breathing difficulty when he was just a few days old and decided to take him to his local doctor.
“His pediatrician took one look at him, put a stethoscope on his chest, picked up Drew, and said, ‘Grab your things. We’re going to walk to the ED (emergency department),'” remembers Elly.
The following day, an echocardiogram revealed a buildup of fluid in Drew’s lungs and heart failure due to a rare and complicated form of congenital heart disease. Along with severe issues with his aortic arch and great arteries, limiting blood flow to his body, it was discovered that Drew’s heart was missing its right ventricle, causing the rest of his heart to work harder than normal.
“We discovered he had a three-chambered heart, and soon University of Iowa Stead Family Children’s Hospital’s pediatric cardiology team was called,” says Elly. “He was critically ill, so they started giving life-saving orders, a medication was started, and AirCare was on the way to get Drew.”
When the AirCare team arrived in Atkins, Iowa to take Drew to Iowa City, Elly and Brad knew their son was in good hands.
“As soon as they walked into the room, you could feel they were confident that they knew what they were doing,” remembers Elly. “They paused long enough to make sure I had an opportunity to hold him one more time before he left. It was terrifying to not know if we would see our child alive again.”
Pediatric cardiology and cardiothoracic surgery teams at UI Stead Family Children’s Hospital developed a care plan consisting of three open-heart surgeries. Drew’s first surgery took place when he was 11 days old, the second at 6 months old, and the third at almost 4 years old.
Since his last heart surgery, Drew has been thriving, even though his low oxygen levels impact his energy levels and require him to modify daily actiivities. He has regular echocardiograms and checkups with his pediatric cardiologist and takes daily medications.
Drew’s congenital heart disease is a lifelong journey. He will need more procedures and surgeries, and will likely become a heart transplant candidate in the future.
“Eventually, his left ventricle — since it’s doing all the work in his body — will start to tire and fail, and we want to be able to watch for signs,” says Elly.
“There’s a big possibility that we will need other specialty teams down the road due to side effects of his congenital heart disease,” Elly adds. “I’m very reassured that his heart team here will be able to refer us to the experts that can help with whatever comes our way.”
Drew’s experiences, along with the specialized care he has received, even inspired Elly to become a patient advocate for the National Pediatric Cardiology Quality Improvement Collaborative, which engages healthcare institutions worldwide to coordinate data and share best practices to improve care for children like Drew.
Drew has persevered and defied odds all his life, shaping both him and his family.
“Drew’s journey has influenced and certainly impacted the way we live our lives,” says Elly. “When he was born, congenital heart disease became part of who we are — we’re now a heart family. We have a heart child. I’m a heart mom. And that’s an important role to us.”