Luna’s Story: A Tiny Heart with Tremendous Courage

Ashlee and Marty were overjoyed to become parents in 2024 after a fraught pregnancy journey. At the 23-week ultrasound, they learned their baby had a serious heart defect known as hypoplastic left heart syndrome (HLHS). Essentially, the baby’s heart had only one ventricle to pump blood throughout the body.

For Ashlee, this difficult news was all too familiar; she lost her younger sister to complications of a heart defect at just 10 days old. In the years since, advances in pediatric heart care have transformed what’s possible for babies, turning once-unimaginable diagnoses into treatable conditions with real hope for the future.

The couple was transferred to the Chicago Institute for Fetal Health, where doctors prepared Ashlee and Marty that Luna would have to undergo a series of open-heart surgeries in order to have a fighting chance. Because of the leaky valves in her heart, they were concerned as to how she would respond to the procedures.

In June 2024, Ashlee and Marty welcomed baby Luna into the world, filled with hope. At three days old, Luna underwent her first open-heart surgery known as the Norwood procedure, during which surgeons build a new aorta from the pulmonary artery, form a shunt to send blood to the lungs, and open the wall between the upper chambers. This procedure is necessary for babies like Luna to balance blood flow until they are strong enough to undergo the next open-heart surgeries, known as the Glenn and the Fontan procedures.

Luna responded well to the Norwood, and the Regenstein Cardiac Care Unit team decided to keep her inpatient while she waited another few months for her Glenn procedure. Though Ashlee wished to be at home as a family, “we made the best of that time inpatient,” she said. “We did daily bath time in the bathtub which was so special and cool. We got to go on walks. We were just waiting, but we made a lot of friends.”

A Trusted Team of Experts  

Unfortunately, testing revealed that the Glenn procedure would be too risky with the leaky valves in Luna’s heart. As a last resort, the team considered a heart transplant. The team found that Luna had extremely high antibodies from previous blood transfusions that heightened the risk of organ rejection – enough to disqualify her for a heart transplant at most pediatric institutions.

But the team at Lurie Children’s was uniquely qualified to proceed with a heart transplant for Luna. Lurie Children’s Pediatric Heart Failure and Heart Transplantation Program is a leader in the country, ranked #1 in Cardiology and Cardiac Surgery by Newsweek and nationally ranked in Pediatric Cardiology and Heart Surgery by U.S. News & World Report. Despite the complexity of patient conditions, Lurie Children’s outcomes are better than the national averages for pediatric transplant centers.

As Luna began to wait for a new heart, her own heart fell deeper into heart failure. She received a ventricular assist device (VAD), a mechanical pump used to support heart function and blood flow to bridge her to transplant. Post-procedure, Luna developed pneumonia, for which she was placed on a form of life support, known as ECMO, for several days.

“That was our rock bottom,” Ashlee said. “The closest we came to losing her.”

Luna suffered a stroke, a known complication of VADs. However, interventional radiologists were able to successfully remove a blood clot from a tiny blood vessel in her brain. With round-the-clock care from her team, she kept fighting.

New Heart, New Start

The family spent the next few months adjusting to a new normal – until one exceptional evening in November. Ashlee and Marty ventured out to the Water Tower Place on their first date night since Luna was born. At the LEGO store, they received the call they’d been waiting for: Luna was getting a heart.

“We were just over the moon,” Ashlee recalled. “The guy at the LEGO store was the first person we told, and he gave us a LEGO heart. It was such a good memory.”

The next day, Luna went into a long, complex surgery with Drs. Michael Monge and David Winlaw. Due to her prolonged need for steroids, Luna’s blood vessels were fragile, requiring meticulous precision of the surgeons.

To protect Luna’s heart from rejection, the team then had to remove antibodies in her blood in a procedure known as plasma apheresis. Luna was the smallest patient the CCU team had ever performed this procedure on, in which the entire body’s blood volume is replaced over the course of several days.

Luna made a slow but steady recovery, and on January 31, Luna’s parents were “euphoric” to bring her home for the first time, Ashlee said. “We were just so excited to give her a house tour and show her her bedroom,” Ashlee remembered.

Luna spent her first birthday at home in June 2025 with a bee-themed birthday party. She returns to Lurie Children’s for follow-up appointments and procedures and is catching up on developmental milestones with a crew of specialized therapists. At home, she loves to play with her blocks, listen to music and swing on her indoor playground.

On her one-year transplant-iversary this November, Ashlee and Marty staged a photo shoot with Luna to celebrate how very far she has come.

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