Welcoming Babies with Spina Bifida
A Message of Hope & Support for
New & Expectant Parents
- 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 extended family, friends, and neighbors. We have written this information keeping in mind our own diverse experiences when our children were born with spina bifida.
We wish you all the best!
- Spina bifida is a neural tube defect that occurs in one out of every 1,000 newborns in the United States. In Canada, one in every 750 babies is born with spina bifida. Spina bifida occurs within the first four weeks of pregnancy, before many women are aware that they are pregnant. For some unexplained reason, the embryo's neural tube (which develops into the brain, spinal cord, and vertebral column) fails to form properly, which results in varying degrees of permanent damage to the spinal column and the nervous system.
- In the United States, approximately 1,500 infants are born with spina bifida each year. According to the 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."
- One question frequently asked by parents of newborns who have spina bifida, or parents who have found out that their unborn child has spina bifida is, "How will this affect my child?" There is great diversity among the population of people who have spina bifida.
- Generally, the level of paralysis 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 spina 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 (which support the ribs), 5 lumbar vertebrae (the lower back) the fused vertebrae the sacrum and the coccyx (tail bone).
- You may hear people referring to their child as having L2 or T10 level spina bifida. The letter refers to the highest area of the spine where the defect occurred. The number refers to the actual vertebra within that area which is affected. Seventy-five percent of children who are born with spina bifida will have a lumbar-sacral level defect, which are the lower areas of the spinal column. Twenty-five percent of children will have defects in the thoracic or the upper thoracic-cervical region. The defect may be limited to one vertebra, or, it may involve several vertebrae.
- In general the level of the defect is related to the level of involvement. So an individual with an L2 (the lower back) lesion will have a less muscle weakness and paralysis than someone with a T8 lesion. The exception to this is children born with cervical spina bifida, which is the highest level of the spina column. These children rarely have paralysis. It is important to realize that some children may experience paralysis and lack of sensation above or below their defect level. This can be referred to as their "functional level." An individual may have a lesion level at L4 but may have a functional level of L1, because that is the highest level where paralysis and lack of sensation occur. It is also important to know that the lesion level is rarely a "straight line." This 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 the level of paralysis.
- 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.
Somewhere from 80% - 90% of children with spina bifida will also develop hydrocephalus. Cerebral spinal fluid is the substance that baths and protects the brain and spinal cord. When a child has hydrocephalus, this fluid is not able to flow freely and will build up inside the head causing pressure within the brain. This is corrected through a surgical procedure called shunting. Usually, if a child develops hydrocephalus, surgery will be performed to place one or more shunts. A shunt is a long, thin tube which is placed within the fluid-filled spaces in the brain called ventricles. When an individual has hydrocephalus, these ventricles expand, putting pressure on the surrounding brain tissue. The shunt drains the excess fluid from the ventricles in the brain. Most shunts extend from the ventricles in the brain to the abdomen, which will absorb the excess fluid. This is referred to as a VP shunt, meaning ventricle-peritoneal; ventricle for the area in the brain the where shunt begins, and peritoneal for the area in the abdomen where the shunts drains. Some children with have a VA or Ventriculo-Atrial shunt. Again, this shunt begins in the ventricle of the brain, but ends in the atrium (one of the upper chambers) of the heart. Before your infant leaves the hospital, you will be given information concerning the signs and symptoms of shunt malfunction and the care of your child's shunt.
In addition to hydrocephalus, 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. They include bladder and bowel complications, and orthopedic problems including spinal curvatures, hip dislocation, or club feet. Children with spina bifida and hydrocephalus may also have learning challenges.
Many children with spina bifida will have a deformity of the brain called Chiari malformation. About one in every three children with spina bifida will exhibit mild symptoms of Chiari syndrome, 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.
Allergy to natural rubber latex is a condition that was first identified in children with spina bifida. Doctors and researchers have found that individuals who are frequently exposed to latex are at greater risk for developing latex allergy. Because our children undergo frequent surgeries and have daily care that includes the use of gloves and other latex products, they have a much higher rate of latex allergy than the general population. Additionally, there is a new theory that children with spina bifida have a genetic predisposition to latex allergy. Once an individual has an allergic reaction to latex, they will remain allergic to latex. Subsequent reactions can become more severe.
The Spina Bifida Association of America makes the following recommendations regarding natural rubber latex allergy: "All individuals with spina bifida should be considered at high risk for having an allergic reaction to rubber and should avoid contact with rubber products, particularly during medical or surgical procedures." This means that your child should be on latex precautions from birth.
- Because latex allergy is not common outside of the spina bifida community you may find that as the parent of a child with spina bifida you will be educating health care, therapy, and educational providers about latex allergy and spina bifida. The Spina Bifida Association of America is an excellent source of information on latex allergy. Details on how to contact them can be found near the bottom of this essay.
Early Intervention services can help your child get a good start during his first three years. In the United States, each state and territory provides early intervention services to infants and toddlers who have a diagnosed physical or mental condition which may affect their development or impede their education.
Each child eligible for early intervention will have an Individualized Family Service Plan, or IFSP. The IFSP is designed to meet child's needs in five developmental areas, including: physical development, cognitive development, communication, social or emotional development, and adaptive development. Services offered vary from child to child and will depend on what your child needs to best meet his or her potential. These services may include but are not limited to: physical, occupational and speech therapy, play therapy, and service coordination.
- Most children with myelomeningocele spina bifida will be eligible for Early Intervention Services. Although babies and children with spina bifida are early customers for extensive health evaluations, infant stimulation, physical therapy, communication enhancement, developmental evaluations, and other professional intervention, it is important to keep in mind that every child deserves to be surrounded by people who love, respect and admire all children.
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 Parent Training & Information Center 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.
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. Several years ago, there were a few studies published which suggested that the rate of divorce in such families was higher than in families without a child with disabilities. However, since then, there have been multiple studies which show that families with a child with disabilities have the same rates of divorce as other families. Many parents find that having a child with disabilities tends 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 to siblings of children with disabilities. Fortunately, there is a 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.
Children who have spina bifida may spend a great deal of time in clinics and hospitals when they are very young. They have a vast and sometimes bewildering array specialists and therapists who provide care and consultation. Frequent medical tests, surgeries, and hospitalizations are common. Spina bifida is a condition that can be very medically complicated 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 be living on their own, making important decisions and directing their own 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 child's self-esteem and competency by providing them ample opportunities to play an active part in their own cares.
Most children with spina bifida have normal or above normal intelligence. Some children with spina bifida and hydrocephalus may experience learning difficulties. Some 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 these tests do not measure many important areas of intelligence, 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 and preschools or at home is important to provide the child with spina bifida the opportunities that are needed to develop strong academic and social skills.
- Thousands of young people with spina bifida across the country are quietly going on with their lives and transforming their communities by just being there. They have dreams and the determination to reach their goals. They learn in regular classrooms in their neighborhood schools with the children who will one day be their co-workers, neighbors and adult friends. Young adults hold diverse and meaningful jobs, maintain their own households, and make significant contributions to their communities every day.
Organizations to Contact for More Information:
Spina Bifida Association of America
4590 MacArthur Blvd., NW, Suite 250; Washington, DC 20007-4226; 800-621-3141 or 202-944-3285; Web: http://www.sbaa.org/
Guardians of Hydrocephalus Research Foundation
2618 Avenue Z; Brooklyn NY 11235; Telephone: 718-743-4473;
National Hydrocephalus Foundation
12413 Centralia Rd; Lakewood, CA 90715-1653; 888-857-3434;
E-mail: email@example.com; Web: http://www.nhfonline.org/
Hydrocephalus Foundation, Inc. (HyFI)
910 Rear Broadway; Saugus, Massachusetts 01906; (781) 942-1161;
World Arnold Chiari Malformation (ACM) Association
31 Newtown Woods Road; Newtown Square, PA 19073; 610-353-4737;
Latex Allergy Links
Web only: http://www.latexallergylinks.org/
Learning Disabilities Association of America
4156 Library Rd; Pittsburgh PA 15234; 412-341-1515;
National Center for Learning Disabilities
381 Park Avenue South; Suite 1401; New York NY 10016; 212-545-7510;
Toll-free: 888.575.7373; Web: http://www.ncld.org/
Learning Disabilities Association of Canada
250 City Centre Avenue, Suite 616; Ottawa, Ontario K1R 6K7; Telephone: (613) 238-5721 Fax: (613) 235-5391 Email: firstname.lastname@example.org; Web: http://www.ldac-taac.ca/
Sibling Support Project
Don Meyer, Director; 6512 23rd Ave NW, #213; Seattle, WA 98117; 206-297-6368; email@example.com; Web: http://www.siblingsupport.org/
National Father's Network
16120 N.E. 8th Street; Bellevue, WA 98008-3937; 425-747-4004, ext. 4286;
E-mail: firstname.lastname@example.org; Web: http://www.fathersnetwork.org/
Children With Spina Bifida: A Parent's Guide (link to Amazon.com)
by Marlene Lutkenhoff; Published by Woodbine House, 1st edition (November 1, 1999); ISBN: 0933149603
Living With Spina Bifida: A Guide for Families and Professionals (link to Amazon.com)
by Adrian Sandler Published by Univ of North Carolina Press; Revised 2nd Edition, 2003; ISBN: 0807855472
You can read an excerpt from the book here: http://uncpress.unc.edu/chapters/sandler_living.html
Spinabilities : A Young Person's Guide to Spina Bifida (link to Amazon.com)
by Marlene Lutkenhoff (Editor), Published by Woodbine House; Publication date: February 1, 1997; ISBN: 0933149867
Giant Steps: The Story of One Boy's Struggle to Walk (link to Amazon.com)
by Gilbert M. Gaul; Published by St Martins Pr; Publication date: January 1993; ISBN: 0312087292
*note - out-of-print but you can find used copies
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
*note - out-of-print but you can find used copies
Permission is granted by the writer to post, print, and duplicate "Welcoming Babies with Spina Bifida", in whole, however it will benefit families, friends and allies of babies born with Spina Bifida. Please cite the author and contact Linda Rowley at email@example.com and let her know how you are using the material.
1999-2007 by Linda Rowley
Revises June 2007 by Linda Rowley.