What are the implications of being born with an NTD?
Newborns with severe NTDs, such as anencephaly and craniorachischisis, die in the first days of life. No treatment is available to alter their clinical course, and supportive care is provided. The majority of infants born with spina bifida survive, requiring extensive medical and surgical care. In the United States, the estimated fatality rate in infancy is 10%. 17 Long term outcome studies have documented survival into the third decade of life in 52% 17 and in 68% 24 of NTD-affected people who had surgical treatment as newborns. The lifetime implications for those with multiple impairments and for their families can be challenging. 16 For spina bifida and other anomalies, management of the health care concerns is best done by a multispecialty team. The level of the meningomyelocele influences the overall range of predicted outcome. 25 Those with sacral and lumbosacral lesions fare best, as compared with those with thoracolumbar NTDs. Ability to ambulate independently, urinary and bowe
