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What can I do?

Understanding and Acceptance
Understanding and acceptance are key to living with spina bifida. All parents dream of having a “perfect” child, and a diagnosis of spina bifida can be daunting, causing fear and uncertainty. The fear of the unknown sometimes causes greater anxiety than the reality of a situation. Competent and caring medical professionals can help ease fears, as can reading through the information provided in this web site. Treatment methods may vary, depending on the practice philosophies of different medical professionals, but there is a core of best practices that can be followed to ensure that a child with spina bifida has the best possible chance to thrive in life.

Experienced Medical Care
It may seem obvious, but it is important to seek qualified, experienced medical professionals. Not all physicians and care practitioners are experienced in treating patients with spina bifida. Ask your physician for a referral to a specialist. Contact a local spina bifida clinic. If your health plan has a patient care hotline, call and ask for referral information.

Promote Independence/Interdependence
Encourage independence and also interdependence. Promoting independence is a vital aspect of any parent’s or caregivers’ role. Independence is necessary to achieve self confidence, but not at the expense of one’s well-being. It is important for a child to grow up to be as independent as possible; yet, it is equally as important that caregivers encourage the child to ask for and be willing to receive help when it is needed. We all rely on various supports and other people to be successful in life. Reinforce the fact that no one is completely independent and it is OK to need and accept assistance from others.

Emphasize Personal Care
The importance of personal care increases as a child grows older and parents are less inclined to closely monitor their child’s personal hygiene routine. Well-established, independent grooming habits that have been taught and reinforced from a very young age will help a child achieve and maintain better health as he/she matures into adulthood.

SBAWP Programs and Services
The Spina Bifida Association of Western PA has many resources for individuals with spina bifida as well as their families and caregivers. We’re here to help. Our programs and services provide a continuum of service, education and advocacy for all stages of life.