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Spina bifida
 

Spina bifida

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    Spina bifida Spina bifida Presentation Transcript

    • Spina Bifida : An overview of the most common permanently disabling birth defect in the United States Anne Marie Webster, APRN, MSN, CPNP, PMHS
    • Test your knowledge…
      • Pre-test
    • Question #1
      • Why is the rate of Spina Bifida and other associated Neural Tube Defects declining?
        • A. Implementation of folic acid fortification in cereals and recommendations for prenatal folic acid supplementation
        • B. Early detection of NTDs with elective terminations of pregnancy
        • C. Underreporting on birth certificates
        • D. All of the above
    • Question #2
      • Taking daily folic acid in a multivitamin before getting pregnant can reduce the chances of having a child with Spina Bifida by what percent?
        • A. 50
        • B. 90
        • C. 30
        • D. 70
    • Question #3
      • Which of the following are proven risk factors that increase the chance of having a pregnancy with a NTD?
        • A. Maternal obesity, smoking, high maternal temperatures early in pregnancy, alcohol abuse
        • B. Maternal obesity, anticonvulsant use, high maternal temperatures in early pregnancy, a previous NTD affected pregnancy
        • C. Smoking, anticonvulsant use, high maternal temperatures early in pregnancy, Hispanic ethnicity
        • D. Maternal obesity, alcohol abuse, smoking, a previous NTD-affected pregnancy
    • Question #4
      • Which of the following is not a typical problem associated with Spina Bifida?
        • A. Mobility Problems
        • B. ADHD
        • C. Hearing problems/deafness
        • D. Hydrocephalus
        • E. Urinary Tract Infections
    • Question #5
      • The new fetal surgery for Spina Bifida has been shown to
        • A. Reduce the rates of needing a shunt for hydrocephalus
        • B. Reverse damage that has already taken place in the spinal cord
        • C. Increase overall cognitive scores and intelligence
        • D. Decrease mortality rates for mothers and affected infants
    • Question #6
      • An older individual with Spina Bifida is more at risk for all of the following except?
        • A. Depression
        • B. Diabetes
        • C. Social Isolation
        • D. Decubitus Ulcers
        • E. Obesity
    • Current Statistics
      • One out of 2,500 newborns in the U.S. is born with SB
      • About 70,000 persons are in U.S. living with this condition
      • Occurs during 3 rd -4 th week of pregnancy before most women know they are pregnant
      • 400 mcg Folic Acid EVERY DAY to help prevent-4,000mcg if have had previous NTD
    • Spina Bifida Terminology
      • Spina Bifida “split or divided-spine” and is a general term for several different spinal cord defects and is a type of Neural Tube Defect (NTD)
      • Chiari II Malformation- abnormal development of lower part of brain (hindbrain)-can cause cervical cord dysfunction
      • Meninges -protective cover of the spinal cord
      • Meningocele -meninges protrude through spinal column
      • Myelomeningocele -meninges and spinal nerves protrude through spinal cord opening
      • Spina Bifida Occulta -small defect of some of the bones in the spine-no open abnormality at birth, usually asymptomatic
      • Lipomeningocele/Lipomyelomeningocele -fatty-defect in the spinal cord
    • Terminology Continued…
      • Hydrocephalus -excessive spinal fluid in and around the brain
      • Syrinx -a fluid-filled space in the spinal cord that can cause neurologic symptoms
      • Neurogenic Bowel/Bladder -the condition where the bowel/bladder does not empty correctly, usually due to nerve damage and decreased sensation
    • How does this relate to me in my job?
      • Yes, Spina Bifida is on the decline, however, people with SB are living longer and we are seeing new chronic problems that we have never seen before!
      • There are 1500 babies born each year in the United States, the 30 year survival rate is near 90%
      • Children with SB ages 1-17 have average medical expenditures 13 times greater than children without Spina Bifida
    • Not just the spine…Multisystem Disease
      • Hydrocephalus
      • Tethered Cord
      • Club feet/limb abnormalities
      • Skin Ulcerations/breakdown
      • Scoliosis/Kyphosis
      • Mobility problems
      • Neurogenic Bowel
      • Neurogenic Bladder
      • Learning Disabilities
      • ADHD
      • Obesity
      • Depression
      • Decreased abilities for independent ADLs
    • Chronic Disease
      • Level of defect often correlates to level of sensation/mobility-not always!
      • Symptoms progress over time, many surgeries
      • Daily maintenance of urine and bowel-CIC and regular Urology appts have decreased renal failure and improved life-span
      • Lack of transition and services for adults, many adult providers are not familiar with these needs in adults
      • Persons living longer-problems with chronic pain (hardware in back), depression, social-isolation, obesity, osteoporosis
    • Burden of Disease
      • Many appointments
      • Frequent admissions- average admission 12.5 days
      • Transportation Issues-adaptive drivers licenses, lifts
      • Caregiver Issues- FMLA, daily ADLs, stress, affects on other children
      • School Issues- IEP
      • Therapists- PT/OT/ST
      • Cost of supplies/medications (i.e.. Adult diapers not covered, bowel supplies not covered)
      • Advocating for the child/family member
      • 20% are able to maintain employment full-time as adults
      • Lack of support for families
    • Things are looking up!!!
      • There are more resources today than ever before!
      • CDC is currently doing studies to establish a National Spina Bifida Patient Registry and a SB electronic medical record
      • CDC is funding 15 states to report birth defects (not SC)
      • With technology and routine Urologic care, we can prevent renal complications in most children
      • New fetal surgery
      • New options for shunts, 3 rd ventriculostomy
      • SBAA great resource
    • MOMS: Management of Myelomeningocele Study
      • Funded by the National Institutes of Health, 2003-2010
      • 183 total participants
      • Published results 2/2011
      • One group had fetal surgery between 19-25 weeks gestation and were monitored the remainder of the pregnancy; other group had surgery at birth—both groups delivered the infant at the high-risk fetal center
      • Exclusion criteria-maternal, fetal, obstetric reasons (obesity, other fetal malformations, hx preterm labor, etc)
      • Fetal surgery done at three hospitals, Children's Hospital of Philadelphia, Vanderbilt University Medical Center, and University of California-San Francisco
      • The children were examined and tested at 12 and 30 months of age
    • Findings
        • Primary Outcomes:
        • Death, placement of a shunt, or the need for a shunt
        • A composite test of mental development and an assessment of motor function
        • Secondary Outcomes:
        • Neonatal morbidity and mortality
        • Surgical/Obstetric complications
        • Locomotion capabilities
        • Assessment of disability
    • Findings
      • Prenatal group 68% met one of the primary outcomes (undesirable), 98% of the postnatal group met these
      • Less brain stem herniation in prenatal group (64/96%)
      • Prenatal 2 or more levels above predicted/postnatal 2 or more levels below in motor function
      • Postnatal with higher incidence of tethered cord
    • Findings Continued
      • Prenatal Complications- (pre/postnatal %)
        • preterm delivery (below 37 weeks)- 79%/15%
        • placental abruption- (26%/0%)
        • spontaneous membrane rupture- (48%/0%)
        • Oligohydramnios
        • average birth weight- 2383g versus 3039g
        • Uterine dehiscence and/or uterine rupture with subsequent pregnancies
    • Take Home Points/Study Limitations
      • Strict exclusion criteria in moms (obesity)
      • Experienced centers doing the fetal and postnatal surgery
      • Children have been followed only to 12, 30 months-no long-term data
      • No data on Urologic function
      • Cognitive scores not significantly different at 30 months, children may require a shunt later in life
    • What can I do?
      • Review their medication list thoroughly, make no assumption