by Galen Gregory

Created on: March 14, 2009

"Your baby has spina bifida." Those are surely earth-shattering words for expecting or new parents. After the shock has subsided, the flood of questions begins. What is spina bifida? Will he live? What kind of life will he have? Will he walk? Will he drive, go to college, get married? Will he need care for the rest of his life? How are we going to get through this?

Spina bifida (SB) is a neural tube defect caused by the failure of the fetus's spine to close properly during the first month of pregnancy. The most common and most severe form is myelomeningocele, in which the spinal cord and its protective covering protrude from an opening in the spine. This defect is repaired during neurosurgery shortly after birth, but the damage to the spinal cord and spinal nerves will be permanent, resulting in some degree of paralysis and loss of sensation below the level of the lesion. There is also loss of bowel and bladder control. Many children with SB also have hydrocephalus, which is excessive accumulation of cerebrospinal fluid in the brain, which requires the surgical implantation of a shunt to continuously drain the excess fluid.

Those are the cold, hard facts, but for the parents, the real questions are the ones fraught with fear of the future, doubts about their capacity to handle all of this, grief for what they have lost. Those questions may take months or years to answer. But, hopefully, as they gain more information and seek out support, the journey ahead will seem less daunting.

No doubt, their lives have changed. Their calendar is now filled with many, many penciled in appointments for clinic visits, therapy sessions, and visits with the early intervention specialist. They try to work the home exercises recommended by the therapists into their daily routine. They are vigilant in looking for any signs of skin problems, bladder infection, or shunt malfunction. They remind themselves to be patient and let him dress himself or put his own braces on, even though it would be so much quicker to do it for him. They make the difficult decision to order him a wheelchair. Sometimes they feel so overwhelmed by it all.

But, over time, they realize that their child's spina bifida isn't the first thing they think of when they wake up or the last thing they think of before they go to sleep. Instead, they think about something funny he said, how much fun he had at a friend's birthday party, how excited he was to go fishing with his grandpa.

As their son gets older, there aren't

• 1
• 2
• Next Page >>