Spina Bifida stands as the most prevalent permanently disabling birth defect linked to lifelong impact, affecting approximately 166,000 individuals across the United States. This condition, literally meaning ‘split spine’ due to a neural tube defect (NTD) where the baby’s neural tube fails to develop or close properly, offers a unique journey for every family, underscoring the need for tailored support and understanding. It ranges from hidden occulta to severe myelomeningocele with nerve damage, often causing leg weakness and bladder issues, with surgical interventions like closure and shunt placement improving outcomes.
Typically occurring within the first 28 days of pregnancy, often before a woman realizes she is pregnant, early awareness is key to managing its effects. Folate supplementation before conception can reduce the risk, highlighting the importance of preconception health.
Celebrated as the “snowflake condition” due to its individuality, Spina Bifida varies from mild to severe, influenced by the size and location of the spinal opening. This diversity means each child’s experience is distinct, requiring personalized medical and emotional care.
Every day, approximately eight (8) babies in the United States are born with Spina Bifida or a similar brain and spine defect. Experts suggest a combination of genetic and environmental factors contributes to its onset, with folate deficiency during early pregnancy posing a significant risk. Prenatal screening and ultrasound can aid early detection, while consulting a pediatrician and the Spina Bifida Association offers critical next steps for families, whether adopting or supporting a diagnosed child. Ongoing care plans, including bladder management, support lifelong health.
Books on Spina BifidaLiving with Spina Bifida: A Guide for Families and Professionals by Adrian Sandler Spinability: A Parents Guide for Children with Spina Bifida by Marlene Lutkenhoff and Sonya G. Oppenheimer Children with Spina Bifida: A Parents’ Guide by Marlene Lutkenhoff Ann’s Shadow: Living with Spina Bifida by Karen L. Atkinson Spina Bifida: A Guide for Families by Richard S. Blumberg The Spina Bifida Life Guide by Susan S. Cole |
National Institute of Neurological Disorders and Stroke (NINDS) KidsHealth by Nemours HealthyChildren.org (American Academy of Pediatrics) Centers for Disease Control and Prevention (CDC) Spina Bifida Association Clinic Network Shriners Children’s Hydrocephalus Association – Spina Bifida National Multiple Sclerosis Society – Spina Bifida ASHA Find a Professional APTA Pediatric SectionResources for Parents of Children with Spina Bifida
Spina Bifida Association (SBA)
Offers a National Resource Center, clinic referrals, and guides on health, education, and advocacy for families.
Provides detailed info on spina bifida types, treatments, and research updates for parents.
A parent-friendly guide on spina bifida, covering symptoms, care, and daily life tips.
Offers pediatric advice on spina bifida care, milestones, and family support.
Offers facts, statistics, and resources on spina bifida for parents and caregivers.
Provides a locator for specialized clinics offering multidisciplinary care for spina bifida patients.Children’s Hospital of Philadelphia (CHOP)
Features resources on spina bifida treatment, fetal surgery, and family support from a top center.
Provides care guides, therapy options, and resources to enhance mobility and quality of life for kids with spina bifida.
Focuses on spina bifida and hydrocephalus, with guides and support for managing both conditions.
Offers insights into related neurological conditions and support networks for families.
Connects parents with speech-language pathologists and therapists for tailored support and therapy options.
Offers resources and connections to physical therapists specializing in pediatric care for mobility and development.
Our children with Spina Bifida
* Listed children often have multiple diagnoses and attention should be given to the specific information in each child’s profile.
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Colombia is now open to heterosexual and same-sex couples. Singles may still apply as well.
Heterosexual married couples, single women, and single men can adopt







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