Amanda Schuster says her daughter Emmy is “happy” and “smiles all the time” despite her health problems.

Amanda Schuster, 40, and her husband, Robert Schuster, 38, thought all was well during the first weeks of her pregnancy with their daughter Emmy in 2017. But at a checkup at 20 weeks, the couple received devastating news.

Mrs. Schuster recounts that the doctors advised her to terminate the pregnancy, believing that Emmy would not live long. But the parents were determined and wanted a second opinion. So they went to Seattle Children’s Hospital, where the doctors diagnosed Emmy with Pfeiffer syndrome.

Schuster explains that although she knew the syndrome would lead to a life full of surgeries for her daughter, she was grateful that her baby would live.

“The doctor told us honestly what her life would be like,” she says of the doctor at Seattle Children’s Hospital. “It would require multiple surgeries. But he had treated children with Pfeiffer syndrome…and he could see them going to college and living happy lives. He gave us hope.

The couple clung to that hope when they welcomed Emmy on July 13, 2017. Schuster, who also has a 7-year-old son named Baron, gave birth by C-section and was unable to hold Emmy for two days while doctors examined her. She was born with an enlarged skull and eyes that appeared bulging.

“We knew what she would look like, but seeing her in the flesh was different from what we’d heard or read about it,” Schuster tells PEOPLE. “Holding her for the first time was wonderful, but completely terrifying because she had tubes and wires. It took two nurses to hold her in my arms. It was scary but amazing. It was great to finally meet my baby.”

In the months following the birth, Schuster posted updates on Emmy’s health, including photos, on a Facebook page for family and close friends. But Emmy’s story quickly caught the attention of social media users around the world, making the little girl an Internet sensation.