Tell the truth about spina bifida

Every year in the United States, more than 1000 fetuses in the mid trimester are diagnosed with spina bifida1. Many parents have never heard of this malformation, and are therefore dependent upon their local doctors and midwives for initial counseling. Unfortunately, many healthcare professionals are equally ignorant of the current prognosis of children with spina bifida who have ready access to comprehensive care in a modern multidisciplinary clinic. As a result, much of the information initially provided to couples with a newly diagnosed fetus is biased and misleading. As medical ethicists Bliton and Zaner at Vanderbilt University Medical Center observed, ‘To date we have met and held intense conversations with more than 150 pregnant women and their partners [diagnosed with spina bifida]. Many times, couples admitted, the initial counseling they received from their obstetrician was slanted – both against disability and toward termination of pregnancy. What they remembered was how the initial obstetric consultation portrayed as grim a picture as possible about their future child’s prognosis. Their fears were about mental deficits, ‘‘mental retardation’’, paralysis, and their ability to manage the obvious challenges. All were vulnerable to anxiety, guilt, shock, anger, and grief.’2. Physicians who routinely tell pregnant women that their fetus with spina bifida will be mentally retarded, never walk, and suffer bladder and bowel incontinence are ignoring a wealth of recent literature that contradicts this stereotype. Most of these children are intelligent, adaptable and able to function well in society. Mirzai et al. comment, ‘The majority [of children with myelomeningocele] can have a normal IQ and a socially acceptable degree of continence and be able to walk.’3. To be sure, newborns with spina bifida possess a spectrum of potentials at birth. The greatest determinant of eventual function, by far, is the upper level of the spinal lesion. In this issue, we discuss prenatal diagnosis of myelomeningocele lesion levels in both community and university hospitals4. Armed with this information, healthcare workers and parents alike can access numerous outcome analyses to obtain information specific to the affected fetus.