Katie Gillihan of Itasca and her partner Manny Irigoyen knew their daughter would need critical medical care even before she was born.
During an ultrasound, Gillihan saw her baby, Sophia, would be born with a large omphalocele, a rare abdominal wall defect that causes the liver and intestines to be outside the body.
Contact information ( * required )
With hope and a professional eye Gillihan, a nurse who works in the burn unit at Loyola Medical Center in Maywood, thought one surgery would fix everything. More than five months later, however, Sophia requires even more serious care.
Now the couple is organizing a fundraiser Dec. 8 in Itasca to help offset the enormous costs.
"They can have just the isolated omphalocele and be home within two to three weeks," Gillihan said. "But her lungs didn't develop properly, as a result. There are just so many things you don't know until they're born."
Sophia had two surgeries at Loyola within her first five days of life to repair her organs and she remained in the hospital for more than two months before doctors said she could return home to her parents and 5-year-old sister, Layla.
To thrive at home, Sophia needed to be on oxygen constantly and was unable to suck a bottle, so she was fed via a feeding tube in her nose.
But these measures failed, and Sophia's oxygen requirements kept increasing while she was not gaining weight as expected.
Gillihan said her baby was admitted to Central DuPage Hospital in Winfield by late September.
Doctors inserted a new feeding tube in her stomach, repaired a hernia and performed a procedure to wrap her stomach and esophagus to help with severe reflux. Nearly three weeks later, the baby was transferred to Lurie Children's Hospital in Chicago, where she remains today.
Gillihan said doctors anticipate Sophia will be remain for at least two more months at the hospital, where she is in an induced coma, paralyzed and is using a breathing tube.
"Her heart and lungs are extremely sick and doctors are not sure what triggered everything," Gillihan said. "They suspect she may have gotten an infection that attacked her heart and lungs. Every (problem) is kind of playing into the other."
Sophia's next slated procedures include open-heart surgery next month, having part of her lung removed and inserting a more permanent breathing tube.
"We are trying to take it day-by-day and hour-by-hour," said Gillihan, who is no longer working and is living at the hospital with her youngest daughter.
Her partner, Manny, lives at Gillihan's mother's home in Itasca and cares for Layla, while working on commission as a tattoo artist.
Sophia's inpatient hospital care is paid for, but Gillihan said many therapies are not fully covered. So a former patient of Gillihan's is helping organize a fundraiser for the family from 5 to 8 p.m. Dec. 8 at the Hyatt Place Itasca, 1150 N. Arlington Heights Road.
The event will include food, children's activities, a 50/50 cash raffle, themed baskets and other prizes.
Gillihan said many businesses already have stepped up to help, but she is hoping more will learn of Sophia's story and offer donations of gift baskets for the raffle before Nov. 15.
The family also is raising money with $20 T-shirts and $5 bracelets that bear the slogan "Hope for Sophia." Proceeds will help pay for expenses not covered by insurance, as well as helping the family with costs like gas for driving between Itasca and the Chicago hospital, and on-site parking.