Alex’s Story: Living With Spina Bifida, Supported Every Step of the Way

When Alex’s mom, Vanessa, learned during her 20-week ultrasound that her unborn son had spina bifida, her and her husband’s world changed instantly.

“I was extremely scared and overwhelmed,” Vanessa said. “I had never even heard of spina bifida before.” She was referred to The Chicago Institute for Fetal Health at Lurie Children’s, where she met neurosurgeon Robin Bowman, MD, and the multidisciplinary spina bifida care team. That first appointment marked a turning point.

“They took the time to explain everything, answered all of my questions, and truly made me feel supported,” she said. “I left that appointment feeling much more at ease, confident that Alex would be in the best hands.”

For 50 years, Lurie Children’s Spina Bifida Program has offered that same reassurance to families at their most vulnerable moments. Founded by David McLone, MD, the program was built on a bold vision: to ensure every child, regardless of complexity, receives the highest standard of compassionate, multidisciplinary care.

“From the very beginning, our mission was to help every child not only survive, but reach and maintain their fullest potential,” said Dr. Bowman. “Over the decades, our approach has evolved from life-saving care to life-enhancing care — helping children gain greater mobility, independence, and confidence than ever imagined possible.”

Spina bifida is one of the most complex congenital abnormalities of the nervous system, presenting extraordinary challenges for children and families. Today, Lurie Children’s Spina Bifida Program cares for more than 700 patients each year, supported by specialists across neurosurgery, orthopedics, urology and rehabilitation medicine — working seamlessly together to provide coordinated, individualized care.

Alex’s birth was emotional and filled with unknowns. Immediately after delivery, the medical team assessed him and began care right away. He was taken to Lurie Children’s Neonatal Intensive Care Unit (NICU) and underwent back closure surgery the day after he was born.

“Our time in the NICU was a mix of fear, hope, and learning,” his mom said. “But the doctors, nurses, and specialists became like family. Their support meant everything.”

Today, Alex continues to receive ongoing, well-coordinated care through Lurie Children’s. Regular clinic visits, physical therapy, and occupational therapy are part of a long-term plan designed to help him grow, gain independence, and thrive. His mom said, “He is a determined 7-year-old with a big heart and a courageous spirit. He approaches life with resilience. His greatest passion is wheelchair basketball, and his dream is to one day compete as a Paralympian for Team USA.”

The Spina Bifida Program’s continuity of care, beginning before birth and extending into adulthood, is a defining feature of the program. Through fetal surgery, clinicians can now intervene before a child is born, changing the trajectory of life before the first breath is taken.

“Through research and innovation, we’ve become one of only four pediatric benchmarking Spina Bifida Centers in the nation and one of the largest participants in the national patient registry,” Dr. Bowman said. “With millions in grant funding, we continue to advance treatments and improve quality of life for patients and families around the world.”

Alex’s family has also become advocates beyond the hospital walls. After discovering a local park in Mundelein, Illinois was not accessible for Alex, his mom spoke up and shared his story to raise awareness about inclusion. That advocacy eventually led to an unexpected and unforgettable surprise trip for their family, made possible through Disney.

“What started as a simple conversation about accessibility turned into something incredible,” Vanessa said. “It reinforced how important it is to speak up.”

Looking ahead, her hopes for Alex are grounded in confidence and possibility.

“I hope he grows up knowing he is capable, loved, and strong. I want him to advocate for himself, dream big, and never feel limited by barriers.”

As Lurie Children’s celebrates the 50th anniversary of its Spina Bifida Program, Alex’s story reflects both the progress made — and the promise ahead. 

“As we honor the thousands of children and families whose courage inspires us every day,” Dr. Bowman said, “we recommit to a future where every child with spina bifida can move, grow, and live without limits.”

For Alex’s family, that future already feels within reach.

“Dr. Bowman and the Lurie Children’s team didn’t just care for Alex medically — they cared for us as a family,” his mom says. “Lurie Children’s is our family.”