Do you know someone with a neural tube defect or other birth defect? If so, are there any outward signs of his or her condition? Did it affect his or her ability to go to school or participate in extracurricular activities?

Answer 1

One of my colleague’s sisters was born with a neural tube defect (NTD) similar to Daniel’s open spine. In her childhood, she had some difficulty walking, and in adolescence, was unable to participate in organized sports. As an adult, she has suffered from both meningitis and bladder/bowel incontinence. She has also had difficulty maintaining adequate health insurance coverage.
Some NTDs may give rise to progressive neurological deterioration. Some NTDs have complications of meningitis, especially with open NTDs. Some individuals with NTDs suffer from mental retardation, or learning disability. And then, some individuals with NTDs have the common clinical conditions of paralysis and bladder/bowel incontinence.
Mental retardation occurs in about 10%-15% of persons with NTDs. Many closed NTDs go undetected through childhood, and the child may suffer learning disabilities without any diagnosis of a NTD. Many individuals with NTDs have medical complications in adulthood. And of course, depending upon the differential diagnosis of the NTD, many individuals born with a NTD may not survive past the first year of life.