Lily

Previous anatomy scans had not provided a good image of baby Lily’s heart. The medical director of the St. Louis Fetal Care Institute, attended mom-to-be, Sara’s, next appointment to assist with the ultrasound. After a thorough examination, the ultrasound revealed that baby Lily had two issues: her heart was positioned incorrectly, and she had Tetralogy of Fallot, which is a series of four congenital heart defects and she would require open heart surgery four-six months after she was born.

Following that appointment, Lily’s parents met with the fetal heart team at SSM Health Cardinal Glennon Children’s Hospital. This was a full day of meetings with the Maternal Fetal Care Team, an echocardiogram to view the baby’s heart in more detail, and appointments with the pediatric cardiologists and nurse practitioners who would help them navigate the journey ahead of them.

At Lily’s 33-week ultrasound, something new was discovered on the scan and a fetal MRI was scheduled. The MRI showed an extremely rare series of congenital birth defects called Pentalogy of Cantrell. While a child does not need to have all five birth defects to have this condition, the MRI revealed that Lily had three. These new developments meant that Lily would now come to the NICU at Cardinal Glennon immediately after birth.

On September 25, baby Lily was born at 38 weeks at St. Mary’s Hospital-St. Louis. Upon her arrival, she was transferred to the Level IV Neonatal Intensive Care Unit (NICU) at Cardinal Glennon. The entire staff was amazed at how Lily was thriving. Many of the anticipated problems were not as serious as expected. Her total stay in the NICU was one week.

Lily’s heart was mended just in time for her very first Valentine’s Day. At just four months old, she underwent open-heart surgery. After a week in the hospital, she was able to go home.

Two months later, Lily’s parents noticed something was wrong—Lily was struggling to breathe. A trip to the emergency room confirmed their worst fears. Lily was experiencing complications from her diaphragmatic hernia and needed emergency surgery. Her surgeon repaired the hernia and the omphalocele and also placed a feeding tube.

After another week in the hospital, Lily was home. The next year tested their family in ways they never imagined. Feedings were a constant battle, and Lily’s fragile system struggled to keep food down. Dehydration and vomiting led to multiple hospital stays. There were moments when they feared they would never get ahead of her medical challenges. Slowly, things began to change. With the right combination of medications and a specialized formula, Lily finally started to thrive.

“At 18 months old, Lily no longer needed her feeding tube,” Lily’s mom said. “Just as we removed it, a rainbow appeared outside our window—a perfect symbol of hope after the storm. Today, Lily is bright and joyful. She’s learning to read, zipping around on her scooter, and has an unstoppable love for anything covered in cheese. Looking at her now, it’s hard to believe how much she has overcome. We are endlessly grateful for the doctors, nurses, and staff at Cardinal Glennon—because of them, we get to watch Lily grow, learn, and live life to the fullest.”

How CMN funds help Lily and kids like her:
Lily’s mom utilized the Fetal Care Institute, before Lily’s birth, to ensure she would receive the best care possible once she was born. The Fetal Care Institute, was funded in part by money raised through Children’s Miracle Network Hospitals of Greater St. Louis.