“We were told her life was going to be miserable and she was going to die. It was very worst-case scenario.”
Amanda Schuster, 40, and her husband, 38-year-old Robert Schuster, thought everything was fine in the early weeks of her pregnancy with their daughter Emmy in 2017. But during a 20-week checkup, the couple got some devastating news.
Schuster says doctors instructed her to terminate the pregnancy, believing that Emmy wouldn’t live long. But the determined parents wanted a second opinion. So they went to Seattle Children’s Hospital where doctors diagnosed Emmy with Pfeiffer syndrome.“I had never heard of it before,” Schuster says. “It was scary and my initial reaction was I wanted to go home and research. Don’t Google Pfeiffer syndrome, it’s a nightmare.
. The growth usually leaves children with high foreheads, wide-set eyes, an underdeveloped jaw and an altered nose. The illness affects one in 100,000 people, the NIH reported.Schuster says that although she knew the syndrome would lead to a life filled with surgeries for her daughter, she was grateful that her baby would live.
“It spiraled. It’s been a little overwhelming. I would get messages from parents of kids with Pfeiffer syndrome and it was nice to be able to help new parents through these things we were going through,” she says.
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