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If you have received a prenatal test result for your child, we are here to support you. Our services are free. Talk with one of our trained consultants to determine if parent care coordination would be helpful for you.
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Spina Bifida is a congenital condition often referred to as a neural tube defect that occurs when the spinal cord does not develop properly. In its most severe form, myelomeningocele (MMC), the nerves are exposed to amniotic fluid and movement within the uterus, due to an opening in the child’s back. This exposure causes progressive neurologic injury to the unborn child and can be permanently disabling. The cause of spina bifida is currently unknown, and it occurs in about 1 in 2,000 live births. More commonly known environmental risk factors have been identified that contribute to neural tube defects, including lack of folic acid supplementation and low dietary intake of folate. However, lack of folate accounts for less than a third of all neural tube defects, suggesting a yet-to-be-identified genetic link to the disorder that prenatal vitamins alone cannot correct.
Spina bifida is often detected around the 20th week of pregnancy during routine ultrasound scans and testing.
Postnatal surgery within the first few days after birth has demonstrated some effectiveness, but doctors have discovered that performing revolutionary surgery to repair the baby’s defect before birth, while still in the mother’s womb, leads to better outcomes for the child. Soon after birth, the complications of spina bifida can be treated with mobility aids, bladder and bowel management, and surgery for hydrocephalus which allows fluid in the brain to drain, among other treatment options. Children with spina bifida may need ongoing care to monitor their physical and neurological health.
Medical advances are continually improving treatment options and outcomes so consulting with specialists and major children’s hospitals may be beneficial to find the best possible care.
I need help understanding my diagnosis.
Below are additional support resources that may be helpful.
https://www.chop.edu/conditions-diseases/spina-bifida https://women.texaschildrens.org/program/texas-childrens-fetal-center/conditions-we-treat/spina-bifida-myelomeningocele https://www.cincinnatichildrens.org/service/f/fetal-care/conditions/myelomeningocele-repair Spina bifida - Diagnosis and treatment - Mayo ClinicSpina Bifida Life Expectancy - HRF (healthresearchfunding.orgMalloy C, Wubbenhorst MC, Lee TS. The perinatal revolution. Issues Law Med. 2019 Spring;34(1):15-41. PMID: 31179670.
Read Peyton’s Story here
The mission of the International Federation for Spina Bifida and Hydrocephalus is to improve the quality of life of people with Spina Bifida and Hydrocephalus and their families and to reduce the incidence of neural tube defects and Hydrocephalus by primary prevention, by raising awareness, and through political advocacy, research, community building and human rights education.
Our mission is to build a better and brighter future for all those impacted by Spina Bifida. Fueled by dedicated health care providers, parents, adults, caregivers, and others, we are committed to helping people live longer, healthier lives through: Research, Education & Support, Clinical Care, Network Building, Advocacy.
PrenatalDiagnosis.org wants to provide you with a wide range of support including links to helpful Facebook groups. However, we cannot verify the exact content that you will find on Facebook pages and groups, which vary widely by moderator, participants, and topics.
This is a place for parents whose children are affected by Spina Bifida.
Waiting For Eli: A Father's Journey from Fear to Faith is a book about a Lafayette, La., couple and their infant son Eli who was born with a dreaded birth defect called spina bifida. It is an inspiring story of faith, hope and the power of prayer. The book takes us on an emotional roller coaster ride, starting with the day the author first learns of his son's medical condition. This moving story has a strong pro-life, pro-love message, and is made even more compelling by the author’s descriptions of little miracles along the way.