Coming Together through Fetal Intervention

July 19, 2019 12:30 PM

Kids living with spina bifida run and play at fourth annual summer camping trip

A very special connection was shared by several families who recently gathered together at the River Valley R.V. Park in Gladwin, Michigan: each had a child that had underwent surgery to treat myelomeningocele, the most common and severe form of spina bifida.  Spina bifida, a neural tube defect where bones of the spine do not form properly around the spinal cord, is the most common neural defect in the United States affecting 1,500 to 2,000 babies each year.

While some of the families’ surgeries were performed after birth, the majority were done in utero through open fetal operations, which few other hospitals offer. Since 2014 Michigan Medicine has offered fetal surgery for patients with spina bifida who qualified. Although it is not a cure, the procedure could minimize a child’s need for a ventriculoperitoneal shunt, a surgery to treat excess fluid in the cavities of the brain, and could increase their likelihood of being able to walk on their own.

Through an annual camping trip, some of Michigan Medicine’s first fetal surgery patients and families have come together to help reinforce the connection they all share while the children run, laugh and play with one another in the park.  While prognoses are grim for many diagnosed with the condition, ranging from bathroom and walking issues to neurological damage, Michigan Medicine offers hope for these children to lead thriving lives.