Families facing stressful NICU stays find a helping hand with Little Heroes League

CHICAGO (WBBM NEWSRADIO) — These days, Livi Etue is a fun and happy 7-year-old, but when she was born, her parents Brenden and Kristin Etue say there were concerns she might not make it out of the neonatal intensive care unit (NICU) at Lurie Children's Hospital.

“They delivered her, and for about 3 seconds put her in front of Kristin and myself for a picture, and then took her away,” Brenden said.

He said one of the doctors there told them Livi’s chances didn’t look good.

“She had a complex hole in her heart,” Kristin said. “She had three out of four valves that were not working appropriately. She had a cleft on the optic nerve in her right eye. She had severe hearing loss in her left ear, moderate in her right ear and a cleft lip and palate.

Livi was eventually diagnosed with CHARGE Syndrome, a disorder affecting many areas of the body.

As the number of surgeries and hospital stays increased, so did the medical bills — and stress.

“I remember feeling so completely overwhelmed,” said Kristin. “I'm trying to be a mother to a child that is so sick, trying to give comfort and get to know this baby. In the meantime, we're busy talking to doctors, learning medication schedules, surgery plans, testing schedules and making sure that things aren’t redundant.”

Kim and Will Ulaszek, Kristin’s parents, helped as much as possible, but they wanted to do more — not just for their grandchild but for others in the NICU.

They founded Little Heroes League, an organization dedicated to helping families navigate the challenges of caring for medically complex babies.

“Support, just family support, is huge,” Kim said. “A lot of these families don't have that.”

Will said they “close the gap” by providing the family with a care coordinator, who can “act as a medical interpreter between the family and the medical community.”

“Everybody gets on the same page,” he said.

It's all free of charge to the families.

“To date, with our five partner hospitals, we've served over 700 kids and their families,” Brenden said.

They’re hoping to help even more with money raised at their seventh annual “fun-raiser,” which takes place on Oct. 5, 2024, at Morgan Manufacturing in the West Loop.

Little Heroes League, a Difference Maker.

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