What Parents Hear at Diagnosis and What They Don’t

At diagnosis, many parents are told what their child might not do.

When families hear Spina Bifida, conversations may center around surgery, mobility challenges, hydrocephalus, and medical complexity.

What they are not always told:

• Many individuals describe their quality of life as good or very good
• Life expectancy has dramatically improved
• Independence is possible in many forms
• People with Spina Bifida pursue higher education, careers, relationships, and parenthood
• Medical advancements have transformed outcomes over the last 70 years

Families deserve complete, current, and hopeful information. Especially in their native language.

Read more from the Spina Bifida Association’s guide for expectant and new parents:
https://www.spinabifidaassociation.org/blog/a-guide-to-spina-bifida-for-expectant-and-new-parents/