Living with Spina Bifida

Living with Spina Bifida: A Guide for Families and Professionals

ADRIAN SANDLER
Illustrations by Peter Bedick
Copyright Date: 2004
Pages: 296
https://www.jstor.org/stable/10.5149/9780807867860_sandler
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  • Book Info
    Living with Spina Bifida
    Book Description:

    It is the most common complex birth defect. Spina bifida affects approximately one out of every 1,000 children born in the United States. In this comprehensive guide, Dr. Adrian Sandler offers a wealth of useful information on the medical, developmental, and psychological aspects of this condition.Accurate, accessible, and up-to-date,Living with Spina Bifidais written especially for families and professionals who care for children, adolescents, and adults with spina bifida. This edition contains a new preface by the author, addressing recent developments in research and treatment, as well as an updated list of spina bifida associations.

    eISBN: 978-1-4696-0462-6
    Subjects: Health Sciences

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-xii)
  3. Preface
    (pp. xiii-xviii)
  4. Acknowledgments
    (pp. xix-xx)
  5. Glossary
    (pp. xxi-xxx)
  6. CHAPTER 1 A Holistic Overview of Spina Bifida
    (pp. 1-10)

    “Spina bifida” means a split or divided spine. It is a birth defect that occurs within the first month of pregnancy, when the embryo is about the length of a grain of rice. The cause of spina bifida is not known with certainty, but it is likely that folic acid deficiency during the crucial early weeks of pregnancy sometimes contributes to the problem.

    The defect in the spine may occur anywhere along the spinal column but is usually found in the midback (thoracic), in the lower back (lumbar), or at the base of the spine (sacral). Spina bifida may be...

  7. CHAPTER 2 Neural Tube Defects
    (pp. 11-26)

    What are neural tube defects? How do they arise in the human embryo? What are the clinical features of spina biflda, and how do these changes in the embryo give rise to later problems in the child with spina bifida? Answers to these questions are essential for parents and professionals who want fully to understand this condition. In this chapter, I will begin by reviewing what is known abouthowthe complex birth defect of spina bifida occurs. (As much as we know aboutwhyit occurs will be presented in the section on epidemiology in Chapter 3.) Next, because...

  8. CHAPTER 3 Epidemiology of Spina Bifida
    (pp. 27-40)

    Spina biflda is, to a very large extent, a preventable condition. This statement may come as a surprise to some, but then in previous decades it would have been equally shocking to hear that phenylketonuria (PKU) and congenital hypothyroidism were preventable. Progress in the prevention of these two diseases rested heavily on the science of epidemiology, the study of the patterns of diseases in populations. In this chapter, I will discuss the epidemiology of spina bifida and explain my somewhat controversial position regarding its preventability. After presenting the evidence that suggests a nutritional cause of spina bifida, I also speculate...

  9. CHAPTER 4 Pregnancy and Childbirth
    (pp. 41-50)

    I received a telephone call from the obstetrician in the prenatal diagnosis clinic. She wanted to refer a young couple, Mr. and Mrs. K., who had just received a diagnosis of spina bifida. This was their first pregnancy. Mrs. K. had a raised AFP, and the ultrasound had confirmed their worst fears. At seventeen weeks of gestation, the female fetus appeared to have a large lumbar myelomeningocele and hydrocephalus. They had been told that the hydrocephalus was a bad sign.

    When I saw them the next day, they were composed and asked many questions about spina bifida and the implications...

  10. CHAPTER 5 The Newborn Baby
    (pp. 51-76)

    The birth of a baby is a human experience unparalleled in its drama and intensity. Although the management of labor and delivery in hospitals has undergone some rehumanization during recent years, the medical technology can often be intimidating to parents. This is especially true with babies who are known to have problems that are going to require special care, because there is an air of expectant urgency in the delivery room as the medical team stands by ready for action! A visit to the labor and delivery unit can help prepare parents for the experience. I hope this chapter will...

  11. CHAPTER 6 Infants and Toddlers
    (pp. 77-116)

    In our clinics, we like to organize our appointments by age group, thus seeing children of similar ages on any given day. One week we may see children of school age, the next week mainly older adolescents and young adults, and so on. Although each of these age groups has its specific charm, no group warms the heart like the infants and toddlers! These kids are growing and developing before our very eyes and are a continual source of gratification and wonder to their parents. The members of our clinic team take great delight in sharing in the care of...

  12. CHAPTER 7 Preschoolers
    (pp. 117-144)

    From three to five years of age are the magic years, marked by an incredible growth in language, imagination, and thought processes. New worlds open up in the minds of the preschooler, with new experiences, meanings, roles, games, and fears. It is a time of imaginary friends and real playmates, when a young child develops a sense of who she really is and how she should behave. Preschoolers begin to take the initiative in their relationships and in their play. They become more curious and more confident, learning to engage others and trying on new roles. These are rich years...

  13. CHAPTER 8 The School-Age Child
    (pp. 145-186)

    Middle childhood, spanning the years from age six through age twelve, is a period in which children learn the skills that will be essential to their later survival. They learn about their culture and what will be expected of them. Most important, they learn to be productive citizens. Whereas play is at the heart of the preschool years, work is at the heart of middle childhood. This work should not be grueling or unpleasant but fun to do and satisfying to accomplish. Indeed, for a child engrossed in collecting rocks or drawing horses, work and play become the same thing....

  14. CHAPTER 9 The Adolescent and Young Adult
    (pp. 187-208)

    Adolescents with chronic conditions are living longer. Almost a third if the individuals with spina bifida in our clinic are thirteen years of age or older. Not only are there important medical issues in this age group, but there also exist unique and critical developmental and psychological issues specific to adolescents and young adults. What services are available to meet these complex needs? Sadly, this age group has historically been neglected when it comes to provision of services. A recent survey from the National Center for Youth with Disabilities (NCYD), an information and resource center in Minneapolis (NCYD, Box 721,...

  15. CHAPTER 10 Focus on the Family
    (pp. 209-222)

    One of the major revolutions in children’s health care during the last century is the discovery of the critical role of the family in children’s lives. It seems laughable that the medical community could have overlooked this simple fact, but it’s true! As recently as the 1960s, many major pediatric hospitals had no place for parents to stay with their sick children, and many infants and toddlers literally withered away in the despair of separation. The past ten years have witnessed the most significant commitment to family-centered health care. This trend has been championed by the Association for the Care...

  16. CHAPTER 11 Focus on Education and Work
    (pp. 223-242)

    The ongoing debates about education in the United States have caused us to focus on the many problems facing schools. Violence, poverty, drugs, and declining standards are of great concern and raise enormous public policy issues. Sometimes, in a climate like this, it is easy to forget the positive as we focus on the negative. Indeed, many positive trends exist in American education. In no area is this more true than in the education of children with differences.

    Only twenty years ago, almost half of all children with special needs were out of school or inappropriately placed. Typically, they were...

  17. APPENDIX Directory of Spina Bifida Associations
    (pp. 243-252)
  18. References and Suggestions for Further Reading
    (pp. 253-260)
  19. Index
    (pp. 261-264)