The Bogdan family from Colorado is sharing their journey with their 2-year-old daughter, Elizabeth, who was diagnosed with spina bifida myelomeningocele, the most severe form of spina bifida. Despite being told that Elizabeth would be paralyzed from the waist down, the family opted for in-utero surgery at Children’s Hospital Colorado, which has shown improved mobility and lower shunt rates in children with spina bifida.
Dr. Nicholas Behrendt explained that the surgery evaluates strict criteria to ensure the risk is worth the potential benefit. Dr. Chris Derderian, a pediatric and fetal surgeon at Children’s Hospital Colorado, emphasized the importance of families and providers knowing that fetal surgery is an option for this condition.
Elizabeth, now 2 years old, is crawling and talking, defying the initial diagnosis. The Bogdan family hopes that sharing their story during Spina Bifida Awareness Month will offer support and hope to other families facing similar challenges. They want to show that there are options available to improve outcomes for children with spina bifida.
Overall, the Bogdan family’s journey highlights the importance of awareness, early intervention, and access to specialized care for children with spina bifida. By sharing their experience, they hope to inspire and empower other families navigating similar medical challenges.
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