DOWNERS GROVE – Grace Enzbigilis is only 5 months old, but she’s endured more medical procedures than many people face in a lifetime.
Grace, who lives in Downers Grove, was born Feb. 18. She was diagnosed with craniosynostosis and underwent cranial surgery when she was just 4 weeks old.
Craniosynostosis is a birth defect in which one or more of the fibrous joints between the bones of a baby's skull close prematurely, before the brain is fully formed. Brain growth continues, giving the head a misshapen appearance.
The surgery was successful, but Grace later experienced an adverse reaction to pain medication, which resulted in severe breathing difficulties. She was intubated and spent three days in pediatric intensive care.
Grace was later diagnosed with laryngomalacia, a condition in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction.
A swallow study was performed, and Grace was diagnosed with dysphagia, or difficulty swallowing. She aspirated small amounts of formula and refused to eat. She was released from the hospital 100-percent dependent on a nasogastric feeding tube.
“It breaks your heart,” said Joe Enzbigilis, Grace’s uncle. “It’s tough.”
But despite the many medical obstacles Grace has faced, her family maintains a positive outlook.
“Her quality of life is good,” Enzbigilis said.
He added a close-knit family and strong faith have been enormously helpful.
“Without that, this would be 1,000 times more difficult to deal with,” he said.
A variety of physicians have been involved in Grace’s care, including a neurosurgeon, plastic surgeon, pediatrician, speech specialist and ear, nose and throat specialist. A home care nurse visits Grace each week. In April, she was fitted for and started wearing a helmet.
The cost of Grace's medical care has exceeded $200,000. Her parents, Alan and Linda Enzbigilis, have no idea what the ultimate out-of-pocket expenses will be.
Grace may require a second surgery to adjust some residual issues not corrected by the helmet. She will rely on a feeding tube for an undefined amount of time, and she may have a tube placed into her stomach, which would require yet another procedure, her uncle said.
“She still has a couple of surgeries ahead of her,” Enzbigilis said. “You have to take it day by day.”
To help ease the financial obligations, Enzbigilis started a GoFundMe page, Caring for Grace, which has raised more than $12,000. The fundraising goal is $20,000.
Enzbigilis said he’s overwhelmed by both the GoFundMe contributions and the prayers and well-wishes his family has received.
“It’s been unbelievable,” he said. “We have the best friends and the most incredible family. It’s just incredible. I think we’re lucky to live where we live.”
How to help
To make a donation, visit https://www.gofundme.com/caring-for-grace.