Just a decade ago, it would have been nearly unthinkable for a child with a severe case of spina bifida to be born with the ability to use their legs. Historically, paralysis was almost guaranteed for newborns facing serious forms of this condition. However, innovative fetal surgery has changed the narrative for infants like the now 21-month-old Mia Johnson, allowing them to defy expectations and embrace a future filled with possibilities.
At just under two years old, the resilient Mia — diagnosed with the congenital defect during a 24-week anatomy scan — has quickly emerged as a beacon of hope due to a pioneering fetal surgery that enhances mobility in affected infants. Walking alongside her on this journey is her mother, Laura Johnson, a passionate advocate in the spina bifida community, who shares Mia’s journey to raise awareness and highlight the potential benefits of this groundbreaking procedure.
Changing the Narrative
Traditionally, spina bifida, which occurs when a portion of the spinal cord protrudes through an opening in the backbone, was treated only through surgery performed after birth. However, medical experts have discovered that in-utero interventions can significantly improve mobility and overall quality of life for patients. While identifying the defect may be straightforward, securing a physician who understands the advantages of fetal surgery and is skilled enough to perform it can be challenging.
When Laura and her husband first received Mia’s diagnosis, the initial recommendations included either a postnatal surgical intervention or terminating the pregnancy. It wasn’t until a nurse informed them about the in-utero surgical option that they realized there was an alternative with better outcomes than what they had initially been advised.
After consulting with a specialist and learning that Mia’s mobility could improve by as much as 50% with a successful operation, the Johnson family decided to proceed with the surgery and embarked on an extensive screening process to determine their eligibility. Two weeks later, they made history as one of the first mother-child pairs to undergo this type of fetal surgery for spina bifida at St. Joseph’s Hospital in Florida.
“They performed a C-section to access Mia,” Laura explained. “[The surgeon] carefully turned her over and noticed she had missing skin on her back, so they had to use a skin graft while repairing her spine before stitching me back up, leaving her safe inside.”
Laura noted that every child’s recovery is unique, but she firmly believes the surgery has made a significant difference for Mia. Just a month post-surgery, Mia was born, moving her toes and showcasing the progress that many once deemed impossible. Today, not even two years later, she is making remarkable strides, surpassing milestones that were once thought unattainable due to advancements in fetal surgery.
Embracing Independence
Recently, Mia has been mastering her walking skills with a vibrant purple pediatric walker, even taking a few independent steps. Unlike her earlier days, Laura describes the walker as a source of independence for Mia, allowing her to explore her surroundings freely. “One day, she simply decided to take off in her walker and hasn’t looked back since,” Laura remarked.
Beyond the miracle of Mia’s journey, Laura emphasizes that she sees her daughter as any parent would. “I don’t view my child as having special needs. I see my daughter, who may need some extra support but is worth every bit of it. I can’t imagine my life without being a special needs mom,” she shared.
Despite the challenges, the Johnson family’s experience with Mia has become their new normal. Witnessing her succeed in areas where many believed she would struggle only fuels Laura’s commitment to advocate for awareness about spina bifida. “Seeing her walk after being told it might never happen is one of the most incredible feelings,” Laura expressed.
A Message of Hope
For parents navigating a spina bifida diagnosis, Laura hopes Mia’s story serves as a source of inspiration — encouraging them to thoroughly research their options, such as the potential benefits of fetal surgery, before making decisions about their child’s care. She believes that, regardless of the challenges, “these children… they are happy.”
To follow Mia and her family on this journey, check out Fight Like Mia on Facebook. For more insights on pregnancy and parenting, visit this excellent resource for pregnancy.
Summary
Mia Johnson, a toddler who underwent groundbreaking fetal surgery for spina bifida, continues to surpass expectations. Diagnosed in utero, Mia’s parents discovered innovative options that significantly improved her mobility and quality of life, challenging the traditional outcomes associated with the condition. With her mother, Laura Johnson, advocating for awareness and support, Mia’s journey serves as an inspiring story for families facing similar challenges.