The objectives of this study were to extend survival analysis into adulthood for patients with myelomeningocele (MM) and to compare survival curves for patients born with varying defect severity before and after 1975. We have reviewed existing data for 904 patients with MM seen in a large multidisciplinary children’s clinic over 43 years. Before 1975, a major contributor to decreased survival is death during infancy. The presence of cerebral spinal fluid shunting is a major contributor to increased survival. After 1975, survival to adolescence is similar regardless of shunt status (p = 0.17). For all patients alive at age 16, a significant decrease in survival probability after age 34 years was found for individuals with shunted hydrocephalus compared to those without a shunt (p = 0.03). Although childhood survival for individuals born after 1975 is not related to shunt status, adults with MM and shunted hydrocephalus may be at risk for decreased longevity.
This study describes ages of acquisition (AOA) of typical adolescent autonomy skills in a regional cohort of individuals with myelomeningocele (MM), aged 12 to 18 years, with a mean age of 14 years 11 months (SD 2y 5mo). Prospectively collected data over 10 years were analyzed. Regression analysis, using Generalized Estimation Equation, provided 50th centile and 75th centile AOA for each skill. One hundred and fifty-eight participants (90 males, 68 females) attended 378 annual patient visits. Patient contacts were equally distributed across age and physical severity groupings. Twenty-four percent of participants had functional lesion levels at or above L2, and 38% between L3-L5, 38% at S1 or below. Eighty-four percent had shunted hydrocephalus, 24% were independent in ambulation, and 69% achieved toileting independence before adolescence. AOA for autonomy skills were delayed by 25 to 30% when compared with typically developing adolescents. Differences in cognitive ability explained the variance in median ages for skill acquisition (p=0.01) more than physical lesion level. Participants acquired community skills at a median age of 16 years 6 months. Twelve percent of 18-year-olds drove cars (9% with supervision, 3% independently), regardless of physical lesion severity. We conclude that adolescents with MM acquire the majority of autonomy skills 2 to 5 years later than their typically developing peers. This study establishes AOA timelines for autonomy skills in adolescents with MM.
Positive urine cultures obtained before spinal surgery for children with MMC significantly increased the risk for perioperative wound (P=0.002). Urinary tract infections can be easily detected and treated. We believe urinary culture, protein deficiencies, or Hct
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