Spina Bifida is a birth defect that affects the spine, and October is dedicated to promoting awareness of it. We met with a mom from Luzerne County who wants to get the word out that it's not a death sentence.
It's hard to miss little Jake Olmsted of Dallas, with that trademark blonde mane and that infectious smile. We caught up with the two-and-a-half-year-old at Allied Services' Heinz Campus near Wilkes-Barre, and met his twin sister Lucy, their older brother Isaac, and mom Nikki Nardell.
"He is fearless. He's not stopping for anyone," Nikki said with a smile.
She explained that a routine ultrasound 16 weeks into her pregnancy showed a problem.
"They were saying words you don't want to hear in an ultrasound, like ventricle and dilated. And then they said spina bifida, and I had never heard the word before."
Spina Bifida is a type of birth defect that occurs when the bones of the spine don't form properly around the spinal cord. It can be mild or severe, and the exact cause isn't known. Jake was just 12 hours old when doctors did surgery to repair his spine. Since he was a few months old, he has worked with physical therapist Jean Fredmund. We found them focusing on Jake's range of motion.
"Unlike adults, where we can tell them to lift their leg 10 times, we have to challenge kids through play. So I need to make him weight shift over and kick in different ways, to challenge and strengthen them more," said Fredmund.
Jake does seem fearless, and very much like a typical two-year-old, motoring down the hallways at Allied to the coveted cookie stash a few doors down. Fostering Jake's independence is exactly what Jean says is so important right now.
"He doesn't see himself as limited. And that's what we can offer- for him to embrace who he is, and to maximize what he can do," Fredmund told us.
And Nikki points out, developmentally, he's right on target with his sister.
"He walks different. And that's about it."
Jake will have bowel and bladder issues as he grows, common problems for Spina Bifida patients. And certainly there will be hurdles, not to mention a continuous physical therapy schedule. But he has come a long way, and both his physical therapist and his mom say they see great things in his future.
"It's not a death sentence. Your kids are not going to be confined. Your kids are not going to live a lesser life."
Nikki says she wanted to tell her family's story in part to connect with other parents of kids who have Spina Bifida. She says they participate in a benefit walk every summer in Philadelphia and would eventually love to see something like that in this area.
