Basic Information about SB

If your family is welcoming a new baby born with spina bifida, or if you have been told
that your unborn child has spina bifida, you probably have many questions and
concerns, as do your family and friends. We have prepared this information in the hopes
that you will be able to benefit from our own diverse experiences with spina bifida.

We are the Spina Bifida Association of the Roanoke Valley and we exist to provide
encouragement, education and support for those living with spina bifida and their
caregivers, families and friends.

We believe that children and adults living with spina bifida and related issues are fully
capable of achieving and maintaining a quality existence. To this end, we pledge our
support not only to our members and friends living with spina bifida but also to their
families and caregivers, the medical providers caring for them and to the community in
which they live. We welcome you, also, and pledge our support to you and to your family
as you embrace your special gift.

This informational booklet is not intended to be a medical reference. It offers basic
information about spina bifida and related conditions and provides suggestions for
further research. Additionally, please accept our invitation to draw from the personal
experiences of our members. We are only a phone call away. You will find a contact list
in the back of this booklet.

Spina bifida

(myelomeningocele, meningomyelocele) is a neural tube defect
occurring in one out of every 1,000 newborns in the United States . The neural tube
exists in the embryo and is the part that develops into the brain, spinal cord and
vertebral column. The interruption of normal neural tube development results in spina
bifida and causes varying degrees of permanent damage to the nervous system and the
spinal column. Spina bifida develops within the first four weeks of pregnancy before
most women are even aware that they are pregnant.

According to the National Spina Bifida Association, "Spina bifida is the most frequently
occurring permanently disabling birth defect...More children have spina bifida than have
muscular dystrophy, multiple sclerosis, and cystic fibrosis combined."

Generally, the level of paralysis or neural dysfunction is related to the level of the spinal
defect. The spine is composed of bones called vertebrae. There are five areas of the
spine. The highest part of the spine is the cervical (the neck) which is nearest to the skull
and composed of seven bones or "vertebrae."

Then, in descending order are the 12 thoracic vertebrae (the trunk), 5 lumbar vertebrae
(the lower back) and the sacrum and the coccyx (tail bone). Refer to Appendix 1 for a
diagram of the spinal column and the related functional areas of the nervous system.

You may hear someone say that their child has a L2 (or T10) level spina bifida. The
letter refers to the highest area of the spine where the defect occurred. Seventy-five
percent of children who are born with spina bifida will have . Twenty-five percent of
children will have defects in the thoracic or the upper it may involve several vertebrae.
may have a lesion level at L4 but may have a functional level of L1, because that means
that the area of paralysis and lack of sensation maybe higher or lower on different sides
of the body. Sometimes, the level of sensation may be different then
Some children born with spina bifida will be ambulatory. A few will walk without
assistance; others will require bracing and a walker or crutches. Some children who walk
when they are younger will find that using a wheelchair for most activities makes sense
as they grow so they can keep up with their friends. Some children with spina bifida will
first start using a wheelchair for mobility when they are a just few years old. Some
children will find that a manual chair fits their needs. Other children who use a manual
chair when they are quite young may find that a power wheelchair gives them more
independence of mobility when they get a little older. The important thing to remember is
that regardless of the level of neurological involvement, people with spina bifida are
more like typically developing individuals than they are different. They have a full
complement of emotions and attitudes, are creative and imaginative in play and pranks,
and grow up to live independent lives with varying degrees of support and
accommodations needed.
Spina bifida will not be the most interesting thing about your son or daughter as they
grow up. Remember that raising any child fills your life with unimaginable delight and
difficulties. We can no longer predict how far our children will go.

Hydrocephalus

a condition associated with spina bifida, occurs in
approximately 70% - 90% of children with spina bifida. Hydro (water) cephalus (brain) is
the term that refers to an excessive amount of cerebrospinal fluid collecting in the
cavities (ventricles) in the brain.
Cerebrospinal fluid (CSF) is a fluid substance normally produced and absorbed at a
constant rate in the brain. It•s purpose is to protect and cushion the brain and spinal
cord. Hydrocephalus develops in spina bifida because of a blockage in the fluid pathway
in the brain and spinal system. In hydrocephalus, the fluid is not able to flow freely and
can result in excess fluid within the brain causing increased •intracranial• pressure and
possible brain damage. This fluid build-up is corrected through a surgical procedure
called shunting.
A shunt is a long, thin, flexible tube. One end of the shunt is placed within the fluid-filled
space(s) in the brain (ventricle). The tube extends from the ventricle(s) to another area
of the body capable of receiving the excess spinal fluid. Most shunts drain into the
abdomen and the fluid is re-absorbed by the body. This type of shunt is called a VP
(ventricle-peritoneal) shunt, meaning ventricle for the area in the brain the where shunt
begins, and peritoneal for the area in the abdomen where the shunts drains. Another
type of shunt is thee VA (ventricle-atrial) shunt. This type of shunt drains into one of the
upper chambers of the heart.
Complete instructions will be given to you regarding the hydrocephalus and care of the
shunt before you leave the hospital following the shunt placement.

The Arnold Chiari II Malformation

occurs in 85-90% of all children
born with spina bifida. The Chiari II malformation is a difference in the brain structure
and primarily involves the lower portions of the brain and the upper portion of the spinal
cord. Specifically involved are:

the brainstem which controls the heart, breathing, blood pressure and such
functions as swallowing, vomiting, sneezing and coughing. Additionally, many of
the cranial nerves which affect the eyes, head and neck originate in the brainstem;

the cerebellum which controls balance and coordinates muscle movements.

When the Chiari II malformation is present, the cerebellum and brainstem are pushed
down which can result in compression of the structures and obstruction of the flow of
fluid. The associated symptoms include breathing difficulties, feeding (swallowing)
difficulties and upper extremity weakness or numbness.

Only about one in every three children with spina bifida will exhibit mild symptoms of the
Chiari malformation, usually in the form of feeding and swallowing problems. About one
in twenty children with spina bifida will exhibit severe symptoms. You should become
familiar with the signs and symptoms of Chiari malformation before your child leaves the
hospital.

In addition to hydrocephalus and the Arnold Chiari II Malformation, children with spina
bifida may have other conditions secondary to their neural tube defect. These conditions
may or may not present themselves in any one individual. We have learned that 2
people with essentially the same level of spinal involvement may not display the same
symptoms or have the same care requirements.

Some additional associated conditions include:

The neurogenic bladder has an altered nerve supply and therefore may not
function •normally•. Among other concerns, the bladder may lack the ability to store
even a small amount of urine or may lack the ability to empty urine at all. Some
children will require intermittent catheterization. Some may experience problems
with urinary tract infections or bladder stones. Some may require surgical
procedures to ensure adequate kidney and bladder function. Your child may
require diagnostic testing to determine the functional ability of the urinary tract and
to assist in the development of a plan of care.
The neurogenic bowel is also caused by altered nerve supply to a portion of
the intestines. Some children will require a •bowel routine• to ensure adequate
emptying of the lower intestine.

Orthopedic concerns include spinal curvatures (scoliosis), hip dislocation, or
club feet. Many children and adults with spina bifida require the use of orthotic
appliances (bracing), walkers, crutches or wheelchairs in order to move
themselves about. Some require corrective surgical procedures.

Tethered cord is a condition that occurs when the spinal cord becomes
•bound• or restricted by scar tissue. All children with surgical repair of the neural
tube defect develop tethered cord but only those children with symptoms such as
pain, loss of neurological function or changes in other functions (such as bladder
function) require surgical intervention to remove the scar tissue.

Children with spina bifida and hydrocephalus may also have learning challenges.
Early Intervention services can help your child get a good start during
his United States , each state and territory has early intervention intervention will
have an Individualized Family Service Plan, or IFSP. Services offered coordination.
To find out the name and contact person for early intervention in your area, call the
NICHCY - The National Information Center for Children and Youth with Disabilities
at 1-800-695-0285.

When your child turns three, he or she will most likely be eligible for special education
services through your local school system. Many children with spina bifida will qualify for
services under a special education category known as orthopedic impairment or
disability. Whenever possible, the child should also be included under the "other health
impairments" category. If your child is found eligible for special education he or she may
be able to access related services including physical therapy, occupational therapy,
speech therapy and early childhood special education.

If you are unsure of your child's rights to special education services you can contact your
local Department of Social Services, your local public school division or your state
Department of Education. To find out the name and contact person for these agencies in
your area call the NICHCY at 1-800-695-0285. They can also tell you about other local
services and resources that may be useful to your family.

Children who have spina bifida will spend a great deal of time in clinics and hospitals
when they are young. They are followed by an array of medical specialists and
therapists who provide care and consultation. Frequent medical tests, surgeries,
therapies and hospitalizations are common. Spina bifida is a complicated medical
condition and, at times, our children may experience periods of medical fragility.

As parents of infants and toddlers it can be difficult to envision our children as
independent young adults. As parents of youngsters who have high medical and
personal care needs, it can be difficult to envision a time when our children will lives. But
the independent living skills our children will need 15 or 20 years from now need to have
their foundations laid today. It is important to foster our play an active part in their own
cares.

Learning

Most children with spina bifida have normal or above normal intelligence. Some children
with spina bifida and hydrocephalus may experience learning difficulties especially in the
areas of reading, math, attention and language. Children with spina bifida may need
special testing to help educators understand how to best to accommodate their learning
needs. It is important to remember that your child will be more like a normal child than
anabnormal child and you will often be surprised by the insight, creativity, wit and
humor of your child. The label of "learning disabilities" in students with spina bifida and
hydrocephalus often masks a range of abilities and talents. Children with spina bifida
benefit from the same care, attention, and inclusion in community life that help every
child grow. As with all children, quality education in neighborhood schools , preschools
and at home is important to provide the child with spina bifida the opportunities that are
needed to develop strong academic and social skills.

You may have concerns

about how a child with spina bifida will affect your
marriage or other children you may have. Or, a practitioner may have given you
information regarding how having a child with a disability affects families.

Unfortunately, there are some practitioners who give families outdated information
regarding the rate of divorce in families with a child who has disabilities without a child
with disabilities. However, since then, there have been multiple studies that show
disabilities tend to amplify life experiences - strong marriages grow stronger, weak
marriages may show more signs of strain.

Brothers and sisters of children with disabilities have concerns similar to those
experienced by their parents. In addition, they face issues that are unique growing body
of research and resources to help parents ensure that siblings of children with
disabilities feel informed and supported. The Sibling Support Project has lots of
information and resources for families. Their contact information is listed below.

Organizations to Contact for More Information

C lick here for a Resource List

Recommended Reading

A Parent's Guide to Spina Bifida
( University of Minnesota Guides to Birth and
Childhood Disorders) by Beth-Ann Bloom, Edward L. Seljeskog; Published by Univ
of Minnesota Pr; Publication date: June 1988; ISBN: 0816614865

Living With Spina Bifida :
A Guide for Families and Professionals; by Adrian
Sandler Published by Univ of North Carolina Press; Publication date: September
1, 1997; ISBN: 0807846570

Spinabilities :
A Young Person's Guide to Spina Bifida by Marlene Lutkenhoff
http://sbarv.org/learn/basic-sb-info.htm
(Editor), Published by Woodbine House; Publication date: February 1, 1997 ; ISBN:
0933149867

Giant Steps:
The Story of One Boy's Struggle to Walk
by Gilbert M. Gaul;
Published by St Martins Pr; Publication date: January 1993; ISBN: 0312087292

Teaching the Student With Spina Bifida
by Fern L. Rowley-Kelly , Donald H.
Reigel (Editor); Published by Paul H Brookes Pub Co; Publication date: August
1992; ISBN: 1557660646

An Introduction to Spina Bifida
By David McLone M.D.*
Introduccion a Espina Bifida (Spanish Version of the above) By David McLone
M.D.*

Answering Your Questions About Spina Bifida
Provides information to help you
understand the basic medical, educational and social issues which commonly
affect people with Spina Bifida. Also contains illustrations and tables. By Dr.
Catherine Shaer *

A Guide to Hydrocephalus
By the Spina Bifida & Hydrocephalus Association of
Ontario , Canada. *

Learning Disabilities and the Person with Spina Bifida

By Phyllis J. Agness
Ed.D.*

Bowel Continence and Spina Bifida
An excellent book aimed at anyone (infant or
http://sbarv.org/learn/basic-sb-info.htm
(7 of 8)8/27/2007 10:18:55 PM
Information about SB
adult) trying to attain bowel continence. Focuses on continence programs, bowel
management development and techniques. Provides sample menus, bowel tracking
charts and glossary of terms.*

Healthcare Guidelines 1995:
Guidelines for Spina Bifida Health Care Services
throughout life. Editor Karen Rauen MSN,RN.*

Children with Spina Bifida A Parents Guide
edited by Marlene Lutkenhoff, RN, MSN;
Woodbine House, 1999 *

Welcoming Babies with Spina Bifida

by Linda Rowley, 1999;www.waisman.wisc.edu/-
rowley/sb-kids/wbwsb.htmlx
*Materials marked with an asterisk are available from SBAA; 4590 MacArthur Blvd
NW #250; Washington DC , 20007-4226 ; Telephone: 800-621-3141; 202-944-3285;
Fax:
202-944-3295 E-mail: spinabifda@aol.com