Josie was diagnosed with Spina Bifida, a condition where the spinal cord protrudes outside the body, while still in her mother’s womb. Dr. Sarah Korth met her parents as they navigated the very difficult decision about whether to have risky prenatal surgery to potentially improve Josie’s life. Listen to this inspiring story about this family’s journey.
Jackie Stone: In recognition of Rare Disease Month, I am joined by Dr. Sarah Korth, director of the Spina Bifida Center at Kennedy Krieger Institute.
Dr. Sarah Korth: I clearly remember meeting Josie’s parents for the first time before she was even born during a prenatal counseling visit and leaving with the impression: “wow, is this baby lucky”. Josie’s parents’ almost palpable faith, love, and support are awe-inspiring, and I feel honored to share a small piece of their story.
Early in pregnancy, Josie was diagnosed with spina bifida, a condition in which the spine does not form properly. Children with spina bifida can experience everything from mild muscle weakness to complete paralysis of their legs. There is no cure for spina bifida. However, there are increasingly new interventions available for conditions that are diagnosed prenatally, and fortunately, this is the case for spina bifida. Life-changing surgical advancements have been made to decrease the amount of neurologic damage and decrease the need for brain surgery. Angie faced an unusual and crucial decision on whether to undergo a surgery through her uterus to close her baby’s back in the middle of her already high risk pregnancy for the chance of maximizing Josie’s outcomes. And because the surgery must be done before 6 months of pregnancy, she only had a week or two to decide.
No doubt this was a difficult decision, but Angie said she knew they were chosen to be Josie’s parents for a reason and they would offer her every opportunity and would push her to be the best she could be. Even if risks were involved.
Today, Josie is a bright, strong-willed, happy, and resilient 2 and a half year old with a smile that lights up a room. She loves singing, coloring, dolls, teasing her older brother, and she gets a huge smile on her face when anyone tells her she looks beautiful. She is not only quickly crawling, she is learning to pull herself up to stand, and has even started taking steps when you hold her hand.
Right from the beginning, Josie’s parents have done everything they can to support her and it has been thrilling to watch her progress. The sacrifices every parent makes for their child is inspirational. They have reminded me that with love, encouragement, support, and determination, an important foundation of “yes-I-can” is laid. And Josie is a “yes-I-can” All-Star.