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Prenatal counseling for myelomeningocele: prognoses, decisions and outcomes


In 2007, we reported the outcomes of 238 patients counseled by pediatricians following ultrasound (US) diagnosis of a nervous system defect (Avellino et al.). Here, we compare a subset of these patients diagnosed with myelomeningocele (MM) to a group of patients not counselled by a pediatrician. We have gathered data regarding prenatal prognoses and outcomes for these two groups.

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We report 39 patients who were prenatally diagnosed with MM between 1996 and 2003 and either saw a Neurodevelopmental Pediatrician (NDVP) for counseling or relied on obstetrical and genetic counselling only. We added to this study review of 1925 ultrasound reports. There were 12 patients counseled by a NDVP and 27 who were not. We restricted analysis to patients diagnosed with MM before 24 weeks gestational age. This included 9 of 12 counseled patients and 23 of 27 non-counseled patients. We analyzed severity of prognoses and outcomes using Fisher's Exact Test. Poor prognosis was defined as a high level lesion with minimal hip movement or less and a 50% chance for mental retardation. Good prognosis was defined as knee movement or more and an 85% chance of normal IQ.


Poor prognoses were noted for 0 of 9 (0%) counseled and 4 of 14 (29%) non-counseled patients (P = 0.13). High-level lesions (L3 and above) were diagnosed in 6 of 9 counseled patients and 10 of 22 non-counseled patients (P = 0.43). A diagnosis of severe hydrocephalus (>15 mm) was no more or less likely in either group (P = 0.58). In the counseled group, 1 of 9 (11%) patients terminated while 18 of 23 (78%) of non-counseled patients terminated their pregnancy (P = 0.0009). Amongst survivors in the counseled group, 1 of 6 (17%) had motor outcomes of L3 or above, while 1 of 4 (25%) of survivors in the non-counseled group were L3 or above (P = 1.0). No differences were found in education level or hospital stay.


Only 31% of MM patients between 1996 and 2003 were seen for counseling by a NDVP. Patients in the non-counseled group terminate more often, but were no more or less likely to have a poor prognosis, high lesion level, or severe case of hydrocephalus. Motor level, education and length of hospital stay were no different among survivors. A larger study group is needed to better understand outcomes for pregnancies counseled only by a genetic counselor and obstetrician as compared to patients counseled by a NDVP in addition.

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Correspondence to David Shurtleff.

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Open Access This article is published under license to BioMed Central Ltd. This is an Open Access article is distributed under the terms of the Creative Commons Attribution License ( ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Goiney, C., Shurtleff, D., Duguay, S. et al. Prenatal counseling for myelomeningocele: prognoses, decisions and outcomes. Fluids Barriers CNS 6 (Suppl 1), S11 (2009).

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