(FOX NEWS) - Gwen and Scott Hartley were already parents to their 2-year-old son Cal when they welcomed daughter Claire Elise in 2001. Gwen had a normal pregnancy with Claire, and a sonogram at 19 weeks showed her baby was developing normally. She was delivered full term without any complications at a hospital close to their home in a suburb of Wichita, Kansas.
"When she was born I said, 'Gosh you forget how tiny their little heads are,'" Gwen told FoxNews.com. But doctors also noticed Claire’s small head and whisked her away for testing before Gwen’s OB-GYN told the Hartleys there might be something wrong with their daughter.
"In true Gwen fashion I said, 'Well, we’ll fix it,' and he said, 'I'm not sure we can,' and that was my first reality check," Gwen said.
Local doctors concluded after three months of testing that Claire, now 14, had the same prognosis as someone who has Down syndrome— she would likely live until her 40s or 50s, and would need a variety of therapies but be able to walk and talk. It was hard for the parents to hear but manageable.
But when the Hartleys went to see an expert in Chicago, he informed them that Claire had been misdiagnosed— and despite their best efforts— likely would not live past age 1. He informed the Hartleys that their daughter has microcephaly, the birth defect linked to Zika virus, but Claire’s condition is not related to the infection. Doctors also diagnosed her with simplified gyral patterns (MSG), spastic quadriplegia, cerebral palsy, epilepsy, scoliosis, and cortical visual impairment (CVI). Claire also suffers from severe reflux that it made it difficult for Gwen to feed her.