Spina Bifida Program

In January 1981, Orlando Regional Medical Center opened the Spina Bifida Center to provide multidisciplinary care for all patients born with this birth defect. In January 1997, the Nemours Children’s Clinic in Orlando joined the Arnold Palmer Hospital for Children & Women. Now, under the direction of Nemours Children’s Clinic in Orlando physicians, the Spina Bifida Center is the only one of its kind in central Florida.

Spina bifida (myelomeningocele) is the most frequently occurring permanently disabling birth defect, affecting approximately one out of 1,000 newborns in the United States. It occurs when the spine fails to close properly during the first month of pregnancy, causing damage to the spinal cord and resulting in varying degrees of paralysis and loss of feeling in the lower extremities. Spina bifida is often accompanied by hydrocephalus, an accumulation of fluid in the brain. Most children with spina bifida also have decreased bowel and bladder function.

A team of full-time nurses who have expertise in case management of spina bifida coordinate outpatient care and family education. When visiting the center periodically, the child may be evaluated independently by the following medical specialists: a pulmonologist, a neurosurgeon, a urologist, orthopedic surgeon, an orthodontist or brace specialist, a physical therapist, an occupational therapist, nurses, and a dietitian.

If the need arises, the center is capable of referring patients to speech and hearing therapists, ophthalmologists, gastroenterologists, dentists, neurologists, and geneticists.

Following their evaluation, the specialists from the various disciplines and nursing staff meet for a team conference. They discuss the needs of the child and the family and outline a management program to coordinate the child’s care. The team follows up with the family, the primary care physician, the school system, and other adults who may be involved in the child’s care.