Dr. Joshua Alexander, director of the spina bifida clinic at the University of North Carolina at Chapel Hill, talks with Joseph Neill, 15, and his mother, Trecia Neill. Joshua, who has spina bifida, is paralyzed from the waist down.

THE N&O: When a child is diagnosed with spina bifida, what does this mean for the child and his or her family?

JOSHUA ALEXANDER: In many cases, hearing a diagnosis of spina bifida can feel like the loss of a dream, especially when it comes unexpectedly. Initially, the families are often faced with multiple medical interventions, and they worry first about the child's very survival. Once they become more confident that the child will survive and leave the hospital, their thoughts usually turn to the future, and they try to gather as much information as possible to learn what that future will bring.

THE N&O: What does it bring?

ALEXANDER: It varies depending upon several factors: the presence or absence of hydrocephalus, which is excess fluid on the brain; the level of the spina bifida defect, which determines the loss of strength and sensation to be expected; and the presence or absence of bowel and bladder control. Another important factor that affects who they will be as adults is the parents' expectations of that child, and the support and acceptance they receive from others.

THE N&O: How severe is this birth defect and why does it seem to be so misunderstood?

ALEXANDER: Spina bifida immediately presents the family with a multitude of challenges that usually remain for the rest of that child's life. If not treated appropriately, these challenges can combine with each other to make matters worse. For example, if a child with spina bifida has decreased sensation, he may have skin breakdown. That skin can then be exposed to urine from incontinence, and if that urine is infected, it can lead to infection in the skin, which might require hospitalization. That is further compounded by the child's lack of ability to move and move out of the wheelchair. Sometimes that increases the risk of becoming obese and the problems associated with that.

THE N&O: What is the cost to society?

ALEXANDER: You can't just measure it in dollar figures. You need to think about how it impacts the child's life, the parents' life, the siblings' lives and need for specialized services from health-care professionals, educators and other community resources. So it's hard to say. I don't think any child with spina bifida would choose not to have been born, but I think most would have chosen the option of facing fewer challenges in life.

THE N&O: Some say North Carolina should invest heavily in a folic-acid campaign like South Carolina's to prevent spina bifida. What kind of prevention campaign would you like to see?

ALEXANDER: South Carolina has a model program that we should emulate. In the past, both Carolinas have had an incidence of spina bifida higher than the national average. Recent publications by researchers in South Carolina have demonstrated a significant reduction in the incidence of spina bifida there since the introduction of their campaign. There should be a significant public-awareness campaign that focuses both on women of childbearing age and any health-care provider who may come into contact with them.

I'd like to see us institute an educational program throughout our state's university system that gives all female students information about folic acid with their admission packet. We should have outreach programs to all schools and sororities in order to educate young women about neural tube defects and how to prevent them.

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