Lorelei’s Heart Journey
Lorelei was diagnosed in 2025, just two weeks after her fourth birthday. She had an echocardiogram after a heart murmur was discovered while she was sick. We expected it to be an innocent murmur, like her sister’s had been.
What followed felt like time standing still. After the echo, we spent what felt like an eternity talking with the cardiology team as they explained that Lorelei had a bicuspid aortic valve, a small atrial septal defect (ASD), and coarctation of the aorta. They took great care in walking us through each diagnosis—what needed to be addressed right away, what could be monitored, and what the next steps would look like.
From there, more testing led to more answers, and more diagnoses. Everything felt surreal. With each appointment came new referrals, new information, and new emotions to process.
We met with cardiology and developed a plan. Ultimately, it was decided that surgery would be the best option for her coarctation. There were more tests, more fear, and more prayers during the waiting period. Her surgery date was set, then rescheduled, and then rescheduled again. It was an emotional roller coaster as we tried to hold on to hope while preparing for the unknown.
On September 18th, Lorelei underwent an end-to-end anastomosis through a thoracotomy. The surgery felt like it lasted a lifetime. Seeing her afterward was one of the hardest moments of our lives—no matter how much you try to prepare, nothing can truly ready you for it.
The days and hours in the hospital were long, filled with both worry and gratitude as she slowly recovered. Once she was finally well enough to go home, a new kind of fear set in—learning how to navigate life after surgery, and adjusting to new worries we had never faced before.
Today, Lorelei is doing great. She is thriving and acts like any other five-year-old, full of life and energy.
We are deeply grateful to the surgeons, doctors, nurses, and staff at the University of Iowa Hospitals and Clinics for their expertise, compassion, and care throughout her journey. We will forever be thankful for everything they have done—and continue to do—for our Lorelei.
We walk to support Lorelei and those like her. We walk to Save Lives. Help her reach her goal today!