Lillian’s story: a complex medical journey with spina bifida and hydrocephalus

Lillian Puls’ complex medical journey would be considered a long road for a kid of any age – let alone someone who is not even 2 years old. It all started before Lillian was born. Her parents, Maggie and Zach, went in for their 20-week ultrasound near their home in Ames, Iowa. The routine appointment quickly shifted in tone after the Puls’ care team noticed something concerning.

“My heart sank. I knew there was something wrong,” recalled Maggie, a pediatric nurse. “My doctor came back in the room and told us about a long list of possible diagnoses.”

Maggie’s doctor referred her to a fetal medicine expert in Des Moines for a more detailed ultrasound. There, Dr. Jason Picconi, a Perinatologist at MercyOne in Des Moines, detected concerns with the baby’s brain and spine. Dr. Picconi previously trained with Dr. Saul Snowise, medical director of the Midwest Fetal Care Center (MWFCC), a collaboration between Allina Health and Children’s Minnesota. Because of this history, the Iowa-based physician referred the Puls to Dr. Snowise.

“Dr. Picconi said, ‘You’re going to have to go higher than me for answers,’” Zach explained. “The doctor told me, ‘I wouldn’t refer you to Dr. Snowise if I didn’t like him and trust him.’”

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