GEISINGER MEDICAL CENTER -- Being pregnant and minding the health of an unborn child can be difficult even in the best circumstances.
A couple from Snyder County found themselves in an even more difficult position a few years ago. The child they were expecting was diagnosed with a complex and unpredictable disease. It was a job for Geisinger's prenatal pediatrics program.
It's hard not to fall for little 3-and-a half-year-old Griffin but watching him play takes on new meaning when his mom tells the whole story.
"We really didn't know until he was born if he would survive or not," said mom Jamie Swan.
Swan, of Mount Pleasant Mills in Synder County, says she and her husband knew from an early ultrasound something wasn't right. Griffin, in utero, wasn't moving his arms or legs and his feet were clubbed.
He had a birth defect called arthrogryposis multiplex congenita, or AMC. His little body hadn't formed enough muscle.
And sometimes a baby's breathing or swallowing muscles are affected. Elsewhere, Jamie says she was advised to think about terminating the pregnancy.
"It's very rare, so in the cases they had seen, these children did not survive birth."
The family then came to Geisinger and was connected to the Center for Prenatal Pediatrics, a program that treats moms with high-risk pregnancies whose babies could need complex care.
"Education gives you power back," said program manager Mindy Lewis. "It allows you to take control of what' s happening, spiraling out of control, grasping hold of it and saying, this is how I'm going to handle it. We get the privilege of helping with that."
Lewis says Griffin warms her heart. His Mickey Mouse gift was from her.
But she says her consulting team has helped many families through uncertain times, connecting them to spiritual advisers, childbirth experts, and any pediatric specialist they might need.
She was there for every one of Jamie's doctor's appointments, acting as a translator of sorts.
"Regardless of the significance or how profound the diagnosis is, there's still hope for these families to regain some power and control back, from something that seems so powerless in the moment," Lewis said.
Dr. Edward Everett, a neonatologist, says the program has three goals: education, support, and care coordination, all of which can happen earlier in a pregnancy than ever before.
"The technical sophistication that we've been allowed over the years has drastically improved how we can diagnose problems in pregnancy," Dr. Everett said.
Griffin has progressed quite a bit since birth. He does need therapy and more surgeries, but doctors say he's a perfectly healthy kid with a long life ahead of him.
"They're hopeful, the doctors, and we are, that he'll walk and lead an independent life. He'll just adapt and do things his own way, which he already does," said Jamie. "He's our miracle!"