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Transcript of Spina Bifida
Spina bifida occurs in seven of out every 10,000 live births in the United States
SBAA estimates that more than 70,000 people in the United States are living with this birth defect.
Most common neural tube defect in the United States—affecting 1,500 to 2,000 of the more than 4 million babies born each year
Hispanic women have the highest rate of having a child affected by spina bifida
Statistics a combination of inherited (genetic), environmental, and nutritional factors
Lack of folic acid while pregnant... folic acid helps the spinal cord to close
medications used for treating epilepsy or bipolar disorder increase mother's risk of having a child with Spina Bifida
Valproic Acid (used to treat seizures)
Women with diabetes are more likely to give birth to a baby with Spina Bifida
Obese women, those whose BMI (body mass index) is 30 or more have a higher risk of having a baby with Spina Bifida.
Ultimately, the causes are still UNKNOWN
Defect occurs within the first 28 days of pregnancy What increases the risk of having a child with Spina Bifida? 1. Spina Bifida Occulta
2. Closed neural tube defects
3. Spina Bifida meningocele
4. Myelomeningocele The 4 Forms By: Ashley Reesman A congenital defect of the spine in which part of the spinal cord and its meninges are exposed through a gap in the backbone.
Often causes paralysis of the lower limbs, and sometimes mental handicap.
Comes from the Latin "spina" meaning spine, and "bifida" meaning split.
Life long disability that will never go away Folic Acid Study In 1992, the U.S. Public Health Service recommended that all women of childbearing age consume 400 micrograms (mcg) of folic acid daily to reduce the risk of having a pregnancy affected by neural tube defects (NTDs), like spina bifida.
U.S. Food and Drug Administration mandated adding folic acid to all enriched cereal grain products in January 1998.
An estimated 1,000 or more babies have been born without an NTD each year since fortification began. Occulta= hidden
Opening in back is covered by skin or just a tuft of hair
Rarely causes symptoms of disability
Spinal cord is marked by a malformation of fat, bone, or membranes
Few or no symptoms in some individuals but...
Malformation can cause partial paralysis with urinary and bowel dysfunction Spinal fluid and the meninges protrude through an abnormal vertebral opening
The malformation may or may not be covered by a layer of skin.
Few or no symptoms in some individuals
Malformation can cause partial paralysis with urinary and bowel dysfunction as in closed neural tube defect cases Spina Bifida Occulta Closed Neural Tube Defects Meningocele Most severe form, with a variety of cases
Spinal cord/nueral elements are fully exposed through the spine opening
Causes partial or complete motor paralysis and/or sensory deficits in body parts below spinal opening
Affected individuals may be unable to walk and/or have urinary and bowel dysfunction. Myelomeningocele Cannot be detected until second trimester of pregnancy
Common methods of Diagnosis
maternal serum alpha fetoprotein (MSAFP) screening
MSAFP measures the level of a protein called alpha-fetoprotein (AFP), which is made naturally by the fetus and placenta.
Abnormally high levels of this protein in the mother’s bloodstream indicate that the fetus has an "open" (not skin-covered) neural tube defect.
Diagnosis No cure...Life-long disability
Fetal surgery for treatment of myelomengocele
performed in utero (within the uterus)
Open the mother's abdomen and uterus
Sew shut the abnormal opening over the developing baby's spinal cord.
Procedure cannot restore lost neurological function, but it may prevent further losses from occurring and a more safe delivery.
Newborns with spina bifida will have surgery to close the defect and minimize the risk of infection or further trauma within the first few days of life.
Immediate Treatment Long Term Effects
Cognitive abilities suffer
Tend to be disorganized/unfocused
Hydrocephalus: Spinal fluid cannot exit the brain, supposed to exit through the spinal cord but cannot
develops because of Arnold Chiari malformation
Shunt needed to drain CSF (Cerebrospinal fluid) from brain
to open area in stomach and back into the bloodstream
Many individuals will "outgrow" their shunts and must have shunt revisions
85% of individuals with Spina Bifida have hydrocephalus
Tethered cord: scar tissue from back surgery that attaches to the spinal cord or nearby bone.
Causes spinal cord to be pulled on
Can lead to scoliosis
Brain and Spine
The brain stem and the cerebellum (hindbrain) protrude downward into the spinal canal or neck area.
Can lead to compression of the spinal cord and cause a variety of symptoms
difficulties with feeding, swallowing, and breathing control
stiffness and swelling in upper extremeties
leading cause of death in the Spina Bifida population Arnold-Chiari malformation
Bladder and bowel affected because nerves to control bladder and bowel movements were affected
Unable to sense the need to urinate or control urination
Self catheterization: tube into bladder to drain urine
Difficult for individuals to know when they need to make a bowel movement or cannot wait
Digital stimulation: stimulating a bowel movement by inserting a gloved finger into the rectum
Suppositories: medication administered into the rectum that melts to lubricate or stimulate a bowel action
Enema: solution introduced into the rectum to promote evacuation of feces Bladder and Bowel Movements Less sensation and movements in certain lower extremity areas (depends on individual)
Scoliosis: development of a curved backbone
Higher risk of fractures
Contractors from tightening of the muscles (mostly people in wheelchairs)
Degenerative Joint Disease: extra pressure on joints
Bones and Joints Extremely common
Latex= natural rubber
found in balloons, rubber gloves, rubber bands, latex based paint
Always on latex precaution... some may go whole life without having an actual reaction Latex Allergy Shunt to correct hydrocephalus, may have to be replaced multiple times
Spinal cord surgery to help with the tethered cord
Subsequent surgeries to manage problems with the feet, hips, or spine (adjustments)
Assistive mobility devices such as leg braces, crutches, walkers, or wheelchairs
Bowel movement regimens
Occupational and Physical Therapy Long Term Treatment Options Pressure Sores Injuries to the skin that can lead to open sores
Cannot feel pressure, pain, or wetness
Difficulty moving around... especially those in wheelchairs... may sit for long periods of time My Sister's Story Meet Lauren :)
Lutkenhoff, Marlene, and Sonya Oppenheimer. SPINAbilities: A Young Person's Guide to Spina Bifida. Bethesda, MD: Woodbine House, 1997. Print.