After an uneventful pregnancy and planned c-section birth at our local Central Oregon hospital, Levi made his way into the world, seemingly healthy and perfect in every way. His first day of life was spent surrounded by his parents, two excited big brothers, and other visitors who came and went. We were in love with our newest addition.
A day and a half later, our world radically shifted. The “innocent” murmur noted by nurses and doctors turned out to be anything but innocent. A new-to-us pediatrician came on shift, heard his murmur, and Levi was urgently taken for an echocardiogram and diagnosed with critical aortic stenosis, a severe narrowing of his deformed bicuspid aortic valve. He needed to have his aortic
valve dilated, and fast. We were scared and shaken to our core.
Levi was immediately airlifted to a children’s hospital and at nearly two days old, he had his first of many interventions. Using a catheter (a much less invasive procedure than open heart surgery), his aortic valve was successfully ballooned open and his little body was now able to get the blood flow it needed to sustain him. This bought him a year before he’d need his first open heart surgery.
After a week in the NICU we returned to Central Oregon and settled into our new family life, learning all about the world of congenital heart defects. We learned that Levi’s heart defect couldn’t be completely fixed and he would need interventions throughout his life, but thankfully he could still live a vibrant and full life.
Levi spent much of his first year closely monitored by Dr. Urszula Tajchman to see when he would need his aortic valve repaired or replaced. Eleven years later, she still takes the absolute best care of Levi and our family. We are so fortunate to have her in our lives.
Through the years, Levi has grown and developed typically, hitting developmental milestones as anticipated. He’s bright, caring, and incredibly resilient. Throughout his elementary years, Levi played parks and recreation soccer, basketball, and enjoyed biking and swimming.
In the midst of growing up, Levi has endured four open heart surgeries at ages one, three, seven, and ten—all at Stanford Children’s Hospital. He has had his aortic valve repaired, replaced, an aortic aneurysm repaired, an obstruction below his aortic valve removed, a pulmonary valve moved and replaced, and most recently experienced a cardiac arrest while hiking, CPR, another air ambulance ride, and his fourth open heart surgery.
Incredibly, you’d never know Levi has congenital heart disease unless you saw the scars on his chest. He’s incredibly strong and has bounced back after each surgery. He excels academically in middle school, plays piano, has a great sense of humor, is kind hearted, and enjoys traveling and learning about the world around him. He’s our miracle boy.
Levi continues to be followed closely by Dr. Tajchman, as well as cardiologists at Stanford. It makes all the difference to have a primary cardiologist who cares deeply for her patients and goes the extra mile to make sure they receive the best, most comprehensive care. Levi’s heart journey is not over, but we are a stronger, more compassionate family because of it. We are
deeply aware of how precious the gift of life is each and every day. Levi’s life is full of hope and promise and we are so thankful to watch him grow into the young man he is today.