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The book 'Neural Tube Defects' edited by Sonya G. Oppenheimer provides a comprehensive overview of spina bifida and related neural tube defects, emphasizing the need for a multidisciplinary approach to treatment. It includes contributions from various specialists and covers topics such as historical perspectives, management strategies, and the psychosocial aspects of living with spina bifida. The preface highlights the importance of communication among team members to optimize care for affected individuals.

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264 views14 pages

Neural Tube Defects - 1st Edition Exclusive Download

The book 'Neural Tube Defects' edited by Sonya G. Oppenheimer provides a comprehensive overview of spina bifida and related neural tube defects, emphasizing the need for a multidisciplinary approach to treatment. It includes contributions from various specialists and covers topics such as historical perspectives, management strategies, and the psychosocial aspects of living with spina bifida. The preface highlights the importance of communication among team members to optimize care for affected individuals.

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PEDIATRIC HABILITATION

Series Editor

ALFRED L. SCHERZER
Cornell University Medical Center
New York, New York

1. Prevention of Mental Retardation and Other Developmental


Disabilities, edited by Michael K. McCormack
2. Developmental Disabilities: Management Through Nutrition
and Medication, Eric Denhoff and Steven Feldman
3. Early Diagnosis and Therapy in Cerebral Palsy,
Alfred L. Scherzer and Ingrid Tscharnuter
4. Parenting Children with Disabilities: A Professional Source
for Physicians and Guide for Parents, Peggy Muller Miezio
5. Visual Disorders in the Handicapped Child, John L. Goble
6. Early Diagnosis and Therapy in Cerebral Palsy: A Primer
on Infant Developmental Problems, Second Edition, Revised
and Expanded, Alfred L. Scherzer and Ingrid Tscharnuter
7. Attention Deficit Disorders and Hyperactivity in Children:
Early Diagnosis and Intervention, edited by
Pasquale J. Accardo, Thomas A. Blondis,
and Barbara Y. Whitman
8. Medical Care in Down Syndrome: A Preventive Medicine
Approach, Paul T. Rogers and Mary Coleman
9. Manual of Developmental and Behavioral Problems
in Children, Vidya Bhushan Gupta
10. Attention Deficits and Hyperactivity in Children and Adults:
Diagnosis • Treatment • Management, Second Edition,
Revised and Expanded, edited by Pasquale J. Accardo,
Thomas A. Blondis, Barbara Y. Whitman, and Mark A. Stein
11. Early Diagnosis and Interventional Therapy in Cerebral Palsy:
An Interdisciplinary Approach, Third Edition, edited by
Alfred L. Scherzer
12. Autistic Spectrum Disorders in Children, edited by
Vidya Bhushan Gupta
13. Genetics of Developmental Disabilites, edited by
Merlin Butler and F. John Meaney
14. Neural Tube Defects, edited by Sonya G. Oppenheimer

DK5690_FM.indd 2 12/19/06 2:06:48 PM


NEURAL TUBE
DEFECTS

EDITED BY
SONYA G. OPPENHEIMER
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, U.S.A.

New York London

DK5690_FM.indd 3 12/19/06 2:06:48 PM


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No claim to original U.S. Government works


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International Standard Book Number‑10: 1‑57444‑859‑5 (Hardcover)


International Standard Book Number‑13: 978‑1‑57444‑859‑7 (Hardcover)

This book contains information obtained from authentic and highly regarded sources. Reprinted material
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efforts have been made to publish reliable data and information, but the author and the publisher cannot
assume responsibility for the validity of all materials or for the consequences of their use.

No part of this book may be reprinted, reproduced, transmitted, or utilized in any form by any electronic,
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DK5690_FM.indd 4 12/19/06 2:06:48 PM


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, ortho-
pedists, 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 ortho-
pedic 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 disci-
plines, the subjects interdigitate with each other. Not only is the knowledge
within individual disciplines important, but it is necessary to recognize that

iii
iv Preface

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.

Sonya G. Oppenheimer
Acknowledgment

As faculty in the Division of Developmental and Behavioral Pediatrics at Cincin-


nati Children’s Hospital Medical Center, this project was supported by Grant No.
T73MC00032-16 awarded by the Maternal and Child Health Bureau, Health
Resources and Service Administration, DHHS, and Grant No. 90DD0546/05,
awarded by Administration on Developmental Disabilities, Administration for
Children and Families, DHHS.
I would like to thank Nancy Ice, Administrative Assistant, for all of
her help.

v
Contents

Preface . . . . iii
Acknowledgment . . . . v
Contributors . . . . ix

1. History of Spina Bifida . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1


Sonya G. Oppenheimer

2. The Global Epidemic of Folic Acid – Preventable Spina Bifida . . . 9


Godfrey P. Oakley, Jr.

3. Multidisciplinary Management Including Prenatal Care . . . . . . 21


Catherine M. Shaer

4. School-Age Child: Academic Issues . . . . . . . . . . . . . . . . . . . . . . . 37


James W. Loomis

5. Psychological Functioning in Children and Adolescents


with Spina Bifida . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61
Robert T. Ammerman, Marsha J. Nortz, M. Douglas Ris,
and Nicolay C. Walz

6. Teenage Emphasis Achieving Independence . . . . . . . . . . . . . . . . 79


Donna Cheek Zahra

7. Adolescent Health-Care Transition . . . . . . . . . . . . . . . . . . . . . . . 95


Thomas S. Webb and Tena Benson

8. Adults Who Have Spina Bifida: Work and Mental Health . . . 117
Gregory S. Liptak

vii
viii Contents

9. Review of Current Neurosurgical Issues . . . . . . . . . . . . . . . . . . 137


Kerry R. Crone and Benjamin Ling

10. New Orthopedic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151


Junichi Tamai, Jose Herrera-Soto, and Alvin H. Crawford

11. New Urological Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 199


Kazuyuki Nishinaka and Curtis A. Sheldon

12. Families that Have Children with Spina Bifida . . . . . . . . . . . . . 243


Marlene L. Lutkenhoff

13. Ethical Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 255


Linda S. Lazar
Index . . . . 269
Contributors

Robert T. Ammerman Division of Behavioral Medicine and Clinical


Psychology, Cincinnati Children’s Hospital Medical Center, Cincinnati,
Ohio, U.S.A.
Tena Benson Division of Developmental and Behavioral Pediatrics,
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.
Alvin H. Crawford Division of Pediatric Orthopedic Surgery, Cincinnati
Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.
Kerry R. Crone Department of Neurosurgery, Cincinnati Children’s
Hospital Medical Center, University of Cincinnati College of Medicine,
Cincinnati, Ohio, U.S.A.
Jose Herrera-Soto Arnold Palmer Hospital for Children, Orlando,
Florida, U.S.A.
Linda S. Lazar Division of Developmental and Behavioral Pediatrics,
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.
Benjamin Ling Department of Neurosurgery, Cincinnati Children’s
Hospital Medical Center, University of Cincinnati College of Medicine,
Cincinnati, Ohio, U.S.A.
Gregory S. Liptak Department of Pediatrics, Upstate Medical University,
Syracuse, New York, U.S.A.
James W. Loomis Center for Children with Special Needs, Glastonbury,
Connecticut, U.S.A.
Marlene L. Lutkenhoff Division of Developmental and Behavioral Pedi-
atrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.

ix
x Contributors

Kazuyuki Nishinaka Division of Urology, Cincinnati Children’s Hospital


Medical Center, Cincinnati, Ohio, U.S.A.
Marsha J. Nortz Division of Behavioral Medicine and Clinical Psychology,
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.
Godfrey P. Oakley, Jr. Department of Epidemiology, Rollins School of
Public Health of Emory University, Atlanta, Georgia, U.S.A.
Sonya G. Oppenheimer Division of Developmental and Behavioral Pedi-
atrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.
M. Douglas Ris Division of Behavioral Medicine and Clinical Psychology,
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.
Catherine M. Shaer The George Washington University Biostatistics
Center, Rockville, Maryland, U.S.A.
Curtis A. Sheldon Division of Urology, Cincinnati Children’s Hospital
Medical Center, Cincinnati, Ohio, U.S.A.
Junichi Tamai Division of Pediatric Orthopedic Surgery, Cincinnati
Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.
Nicolay C. Walz Division of Behavioral Medicine and Clinical Psychology,
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.
Thomas S. Webb Division of Developmental and Behavioral Pediatrics,
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.
Donna Cheek Zahra Nemours Children’s Clinic, Jacksonville,
Florida, U.S.A.
1
History of Spina Bifida

Sonya G. Oppenheimer
Division of Developmental and Behavioral Pediatrics,
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, U.S.A.

EARLY DESCRIPTION OF SPINA BIFIDA, 10,000 B.C. – 1760

The history of neural tube defects begins in prehistoric time with the discovery of
skeletons identified as having pathological findings consistent with spinal boney
abnormalities (1). These skeletons were carbon dated and felt to exist since
10,000 B .C . and were found in a cave of taforalt in Morocco. Both adults and
infant skeletons indicated that this deformity (probably not spina bifida
cystica) was compatible with life (2). Spina bifida occulta was found in 90%
of 10 adult skeletons from a historic American Indian burial site. The anthro-
pological findings raised questions whether spina bifida was caused by a
genetic influence or an environmental influence (3). An article in the Irish
Medical Journal in 1986 reviewed archeological sites in Ireland from the
Bronze Age 2000 B .C . to Medieval Era 1000 A .D . and the 15th to 18th century.
Nonclosure was found in sacral segments. These findings are intriguing in that
there was no information concerning children, possibly indicating that higher
lesions were fatal. The authors concluded that the high risk noted in recent
years, particularly around Dublin, compared with the low risk in the early centu-
ries may indicate the influence of an environmental factor. Detailed data are
available in the tables in the Irish Medical Journal. The controversy regarding
the etiology continues, despite the discovery of the relationship of folic acid
with spina bifida, and continues to allow us to use the term polygenetic multifac-
tored causation.

1
2 Oppenheimer

Descriptions of spina bifida have been suggested in the writings of


Hippocrates. Other historical references are seen in the writings of Pieter Van
Forest in 1587 and Casper Bauhan in 1964 (4). The most historical connection
is the Rembrandt painting “The Anatomy Lesson of Dr. Tulp” in 1632 (5). In
it, he described patients with spina bifida as did Ruysch (6), also in a painting
by Johan R. Van Neck in 1683. In 1760, Mark Gagne, who is considered the
founder of modern pathological anatomy, recognized the link between spina
bifida and hydrocephalus. Medical literature continued to describe various
aspects of spina bifida including Van Recklinghaus’ description of all forms of
the condition.

PARAPLEGIA AND INCONTINENCE


A fascinating description from a papyrus in the 17th century B .C . highlighted
quadriplegia and its association with incontinence with urine and sexual function
(6). Paraplegia was considered in Edwin Smith’s surgical papyrus in the second
millennium B .C . as an ailment not to be treated (7). Of interest, bracing and
splints, however, have been used since 2400 B .C . Incontinence was also described
in the writings of Hippocrates. Galen (8) understood the relationship between
disease, spinal cord, and bladder problems. The concept of catheters to achieve
continence is not new but has been used since the 17th century, and even catheters
made of bronze and lead were used to bypass urinary obstruction. Surgical diver-
sions for continence were attempted in 1852 by developing an ileo conduit with
ureters draining into a bowel loop and were refined by Dr. Brickers in 1950.
Surgical repairs of these abnormalities were attempted from 1641 to 1892.
Despite the numerous varieties of treatments, they all resulted in death until
Dr. Bayer in 1892 recommended using muscular flaps for closure (9). Previous
treatments had varied from using excision of the sac to sclerosing the sac with
items such as silver nitrate.

HYDROCEPHALUS
Dr. David Shurtleff, a leader in modern treatment for patients with
myelomeningocele, summarizes in his presidential address for the Society of
Research in Hydrocephalus and Spina Bifida the history of treatment of spina
bifida to the recognition of the associated hydrocephalus and subsequent develop-
ment of the Holter cerebral shunt which controlled progressive hydrocephalus (10).
In the 17th century, the possible link between hydrocephalus, paraplegia,
and incontinence was identified. The Arnold Chiari phenomenon though still
not totally understood was recognized in 1894 as a contributing factor to the
production of the hydrocephalus (11). The production of cerebral spinal fluid
and the circulation of the fluid were further described in 1827 through 1872
and later confirmed by Dandy (12).

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