Neural Tube Defects PDF

Preface

Neural tube defects are one of the most complex birth defects and require an understanding of the interactions of multiple systems: the central nervous system, the urological system, and the musculoskeletal system. Because of this, a truly multidisciplinary team of specialists, including neurosurgeons, orthopedists, urologists, nephrologists, physiatrists, orthotists, pediatricians, physical therapists, occupational therapists, nurse coordinators, advanced practice nurses, geneticists, genetic counselors, and now perinatologists, fetal surgeons, and ethicists, are required to provide comprehensive treatment.

Before the 1960s, a complicated team was not needed because the majority of infants born with this defect died from infection and/or hydrocephalus. Once surgical techniques were improved and survival increased, there was a realization that helping these children required many different disciplines communicating with each other and the family. Interdisciplinary teams were established in many medical centers. All team members soon recognized that each member had to have knowledge about all areas.

My intent in editing this book is to provide information that will allow all the different disciplines to gain understanding of how the problems of each system relate to the other systems. The therapists need to know what the reason is for a child to develop progressive orthopedic deformities and to question whether it is due to possible tethering of the spinal cord, not a failure of therapy. Development of poor handwriting and progressive hypotonia may be caused by a syrinx of the cord. Development of decubitus may be due to a change in orthopedic status, including progressive scoliosis. Deterioration of schoolwork may be due to a subtle shunt malfunction.

Though there are separate chapters written by authors in different disciplines, the subjects interdigitate with each other. Not only is the knowledge within individual disciplines important, but it is necessary to recognize that communication with all team and family members is essential so the child and young adult can reach their potential.

This book represents my commitment of 35 years of experience with people with spina bifida but, most important, shares what I have learned from the families, children, and young adults with this most complex birth disorder.

I want to thank my own family: my husband, Frank, and sons, Michael and Peter, who over the years not only allowed me to spend time with families of children with spina bifida, but also developed an understanding of people with special needs.