Warrior Wednesday

Elijah Grey, 7mths old

ASD, VSD, Cardiomegaly

At my 20-week scan, I received news that would forever change my life. Shortly after my ultrasound, I got a call from a cardiologist letting me know they had found multiple heart defects. In that moment, it felt like my world shattered. I couldn’t stop asking myself, “Why?”

I immediately dove into research, spending hours learning about congenital heart defects (CHD) and what this could mean for our future.

Elijah Grey was born weighing just 5 pounds. He was diagnosed with two holes in his heart—ASD and VSD—as well as cardiomegaly, an enlarged heart. Early on, cardiologists told us that the defects were large and would require medical intervention. Elijah struggled to gain weight, couldn’t feed on his own, and had significant difficulty breathing. We went through weekly NG tube changes and multiple hospital admissions during those early months.

At 3 months old, during a routine cardiology appointment, doctors discovered fluid in his lungs. His heart wasn’t able to keep up with the blood flow needed for his body to clear it, and his lungs couldn’t function properly.

At 4 months old, Elijah underwent open-heart surgery at Mott Children’s Hospital. In a six-hour procedure, surgeons repaired both his VSD and ASD. I’ll never forget the surgeon telling us it was the largest VSD she had seen in her 30 years of practice.

Today, Elijah still has small residual holes around the repair sites due to the size of the original defects, along with a slight heart murmur. He now has a G-tube to support his feeding.

We are hopeful that by his next cardiology appointment, his residual holes will close on their own and no further surgeries will be needed. Our biggest goal is to help him continue building strength and transition to feeding orally on his own.

Through this journey, I’ve found so much comfort connecting with other CHD warrior parents through the Levi Foundation. Seeing other children face similar challenges reminds me that Elijah is not alone in this fight—and neither am I.