Ashlee and Marty’s journey to parenthood in 2024 was filled with both joy and unexpected challenges. During a 23-week ultrasound, they learned their baby had a serious congenital heart defect called hypoplastic left heart syndrome (HLHS) — a rare and severe condition where the left side of the heart is underdeveloped, leaving only one ventricle to pump blood throughout the body.

For Ashlee, the diagnosis hit especially hard. She had previously lost her younger sister to complications from a heart defect at just 10 days old. However, medical advances offered hope this time around.

Early Challenges and First Surgery

The family was transferred to the Chicago Institute for Fetal Health at Lurie Children’s Hospital. Doctors prepared them for the likelihood that Luna would need a series of complex open-heart surgeries. In June 2024, baby Luna was born. Just three days later, she underwent her first major procedure: the Norwood procedure. Surgeons reconstructed a new aorta, created a shunt for blood flow to the lungs, and opened the wall between the upper chambers of the heart.

Luna responded well initially. While waiting for her next surgery (the Glenn procedure), she stayed in the Regenstein Cardiac Care Unit (CCU). Her parents made the most of their time there — enjoying daily baths, walks, and building connections with the hospital staff.

Setbacks and the Decision for Transplant

Further testing revealed that the Glenn procedure carried too much risk due to leaky valves in Luna’s heart. The medical team considered a heart transplant as the best option. However, Luna had extremely high antibodies from prior blood transfusions, which significantly raised the risk of organ rejection. Most centers would have disqualified her, but Lurie Children’s Pediatric Heart Failure and Heart Transplantation Program — a national leader in outcomes — was uniquely equipped to take on her case.

As Luna waited for a donor heart, her condition worsened. She received a ventricular assist device (VAD) to support her heart function. Complications followed: pneumonia requiring ECMO life support, and a stroke caused by a blood clot. Through it all, Luna fought bravely with the dedicated round-the-clock care from her CCU team.

A New Heart and New Beginning

In November, during a rare date night at Water Tower Place, Ashlee and Marty received the life-changing call — a heart was available for Luna. The next day, she underwent a complex transplant surgery performed by Drs. Michael Monge and David Winlaw. Because of her fragile blood vessels (from prolonged steroid use), the procedure demanded exceptional precision. Post-transplant, the team performed plasma apheresis — replacing her entire blood volume multiple times — to reduce rejection risk. Luna was the smallest patient they had ever done this for.

Luna recovered slowly but steadily. On January 31, she finally went home for the first time. Her parents were euphoric, giving her a house tour and showing her bedroom.

Thriving Today

Luna celebrated her first birthday in June 2025 with a joyful bee-themed party at home. She continues follow-up care at Lurie Children’s, works with therapists to catch up on developmental milestones, and enjoys playing with blocks, listening to music, and swinging on her indoor playground. In November, on her one-year transplant anniversary, her family held a special photo shoot to celebrate her incredible progress.

“Lurie Children’s is a miracle,” Ashlee said. “We’ll never go anywhere else.”