1. Spina Bifida Sarah Winter, MD Assistant Professor
Cincinnati Children’s
Division of Developmental Disabilities

2. Terminology myelomeningocele/meningomyelocele meningocele
/myelodysplasia
meningocele
lipomeningocele
spina bifida vs. spina bifida oculta

3. When Does It Occur?
Failure of closure of the neural tube occurs within the first 28 days of pregnancy.

4. Embryo at 21 Days

5. What is SPINA BIFIDA? One of the neural tube defects
Abnormal development of the spinal cord and brain

7. Pictures of Spina Bifida

11. What Causes Spina Bifida?
Nutrition? Folic acid supplements are protective of neural tube defects
Genetics? families have higher risk if have had previous child with a neural tube defect
multifactorial

12. Who Can Get Spina Bifida ?
0.6 out of every 1,000 children has a neural tube defect.
Highest prevalence in certain ethnic populations.
Slightly more girls than boys have spina bifida
Occurs less in African Americans than in white individuals.

13. Detection of Neural Tube Defects
Chorionic villous sampling weeks
Alphafetoprotein week 16
Amniocentesis week 16
Screening ultrasound
High resolution ultrasound

14. Prenatal Intervention
Genetic Counselling
Prenatal consultation with neurosurgery and medical director of Spina Bifida clinic
In-utero repair
approx weeks gestation,
normal foot and leg movement.

16. History of the Treatment of Children with Spina Bifida
presence of infants with myelomeningocele detected 3000 years ago
most left untreated until the development of methods to treat hydrocephalus (late1950’s)
Lorber criteria accepted (1970’s)
New England Journal of Medicine, 1985: “Early surgical care is now appropriate for most newborns with myelodysplasia”

17. Treatment Immediate repair of spinal defect (<48 hours)
treatment of hydrocephalus as necessary
85-90% of all children with SB

18. Spina Bifida
Spinal Cord Defect
Chiari II Malformation

19. Spinal Cord Defect paralysis below the level of the lesion
neurogenic bladder
neurogenic bowel
insensate skin
sexual dysfunction
orthopedic deformities

20. Paralysis below the level of the lesion

21. Orthopedic concerns

24. Mobility
Many people with spina bifida need something to help them move about.
crutches and walkers
wheelchairs
leg braces

25. Insensate Skin

26. Bladder and Bowel
Nerves that control the bladder and bowel were damaged before the child with spina bifida was born
this means that the child may have trouble with urination & bowel movements.
many children with spina bifida need to use special medicines and treatments, such as catheterizations, to help them void.

27. Latex Caution! Art supplies: paints, glue, erasers, fabric paints
Balloons, Balls
Toys
Rubber Bands

28. Chiari II Malformation

29. Chiari II Malformation
hydrocephalus
learning disability
swallowing difficulties
vocal cord paralysis
cognitive impairment
central ventilatory dysfunction

30. Hydrocephalus- continued...
A shunt is put in the child’s head to help drain the fluid from the brain to an open area around the stomach. Then it is absorbed back into the blood.

31. Shunt Malfunction Headache Vomiting Decreased level of alertness
Decline in school performance

32. School
A lot of children with spina bifida have trouble with certain parts of school
attention
memory
comprehension
organizing
writing

33. Strategies In School Early Intervention/Preschool
Special Education as Needed / IEP
Regular Classroom Supports
Physical and Occupational Therapy
Nursing Services-Catheterizations/Meds
Adapted Physical Education

34. School Issues Social Isolation Accessibility Issues Peer Acceptance
Safety Issues
Recreational

35. Peer Acceptance Education about the Disability
Differences/ Similarities
Respect Issues

37. Encourage parents to allow their children with spina bifida to experience life.
Hold high expectations for their child and encourage them to continue to try new tasks to increase their feeling of self-competence and confidence .

38. Children with spina bifida need to overcome many obstacles and deal with issues regarding peer, as well as personal acceptance.

39. What Does All This Mean cont...
People with spina bifida can lead long and fulfilling lives.
graduate from high school, go to college, have successful careers
get married
some may have children

40. Salim,
One Year Old

41. RESOURCES National and Local SBA
Bureau for Children with Medical Handicaps/SSI
Therapeutic Recreation
Bureau for Vocational Rehabilitation
Spinabilities
Children with Spina Bifida:A parent’s Guide Woodbine House 1999
UACCDD

42. Questions?