SPINA BIFIDA

WHAT IS SPINA BIFIDA?

Spina bifida (Latin:split spine) is a type of neural tube defect (which is the incomplete development of the brain, spinal cord, and/or their protective coverings) caused by the failure of the fetus's spine to close properly during the first month of pregnancy. Varying degrees of damage to the nerves and spinal cord can occur.

The defect can occur anywhere along the spine and with varying amounts of severity.

Three classes of severity-

  1. myelomeningocele, the severest form, in which the spinal cord is exposed
  2. meningocele is when a sac of fluid comes through an opening in the baby’s back. The spinal cord is not in this sac and there is usually little or no nerve damage. This type of spina bifida can cause minor disabilities.

For these two more severe forms of SB doctors will perform surgery to close the spinal cord a few days after birth or while the baby is still in the womb. The prenatal surgery reduces the chances of hydrocephalus (extra fluid in and around the brain, which can cause learning disabilities as the child grows) and the need to divert fluid away from the brain (which can lead to complications such as infection) after birth and increases the chances that the child will be able to walk without crutches or other devices. However, infants who have this prenatal surgery are more likely to be born preterm than infants who have the surgery after birth.

  1. occulta, the mildest form, in which one or more vertebrae are malformed and covered by a layer of skin. This form of SB sometimes is not diagnosed until adulthood or may never be diagnosed.

CAUSES AND PREVENTION

All of the causes, including genetics and environment, are not known and need to be studied further. It is known that Folic Acid taken before and during the first few weeks of pregnancy can greatly reduce the risk of the baby having SB. Studies are being done to determine why Folic Acid may not be absorbed and if different forms of Folic Acid may be absorbed better by women who may become pregnant. Because the spine forms so early in the pregnancy, it is very important that women who may become pregnant, along with taking Folic Acid, do not use hot tubs or saunas, treat fevers with Tylenol and make sure they are in good health.

DIAGNOSIS

         Prenatal tests can be done in order to predict SB in the unborn baby.

  • Blood test: A high level of AFP (alpha-fetoprotein) in the mother’s bloodstream can mean a higher chance of a neural tube defect in the fetus.
  • Amniocentesis: For this test, the doctor takes a small sample of the amniotic fluid surrounding the baby in the womb. Higher than average levels of AFP in the fluid might mean that the baby has spina bifida.
  • Ultrasound: With this picture of the baby in the womb, the doctor can often see if the spine has developed correctly.
  • After birth: In some cases SB is not diagnosed until afterbirth because it was not detected in the womb or the mother did not receive good prenatal care.

STATISTICS

● In the U.S. approximately 3 in 10,000 babies are born with SB. This number has declined from a rate of approximately 5 in 10,000 in 1996, which is credited to the mandatory fortification of cereal with Folic Acid in 1999.

● The rates of SB births are higher worldwide than in the U.S., with a rate of 1-2 in 1,000 births.

● There is an increased risk of having following siblings with a neural tube defect. It is recommended that mothers who have a child with SB take a higher dose of Folic Acid if there is a possibility of getting pregnant again.

SYMPTOMS AND COMPLICATIONS

The symptoms of spina bifida vary but most people with spina bifida are of normal intelligence but some have learning difficulties. Some need assistive devices such as braces, crutches, or wheelchairs. They may have urinary and bowel problems, or hydrocephalus, a buildup of fluid in the brain and many have a latex allergy. Some may have trouble with relating to others, vision problems, staying at a healthy weight and depression. With good care most have a normal life expectancy.

CURRENT MEDICAL RESEARCH AND STUDIES

The National Institutes of Health provides the majority of research funding for SB research in the U.S. Some of the current studies include:

Psychosocial Adjustments of Adolescents with SB which studies coping mechanisms of 10-12 year old patients with SB.

Management of Myelomeningocele Study (MOMS) which compares pre and postnatal spinal surgery and the effects of both.
Genetics of Spina Bifida and Anencephaly which studies the genetic and environmental factors contributing to neural tube defects.

TEACHING STRATEGIES

Each student with SB will have their own unique needs, so instruction should be tailored to those needs as much as possible. Here are a few strategies that may be used to assist your SB students:

  • Use of a Buddy System
  • Giving extra time to complete assignments
  • Lowering SmartBoard if student is in a wheelchair and addressing at eye level
  • Use of an easel to hold books open
  • Encourage participation and assist with social relationships
  • Teach to use skimming, scanning and use of eye movements
  • Audio recording of lessons
  • Be aware of possible delayed learning
  • Adaptive Physical Education
  • Desks at right level for wheelchair with plenty of leg room
  • Refer to Occupational Therapist for other suggestions

ADAPTIVE/ASSISTIVE TECHNOLOGY

In order to promote self reliance and quality of life the use of the following devices and more may be used:

  • Personal Digital Assistants (PDAs) such as digital voice recorders, smartphones, tablet computers
  • Motorized wheelchairs
  • Adaptive shoes
  • Forearm supports for skiing and walking
  • Standing aides

KNOW YOUR RIGHTS

Kentucky has recently passed a bill that guarantees parents get complete, up to date information when their baby is diagnosed with SB. Because of on-going research and advances in technology, babies born with SB usually have a normal life expectancy, average to above average intelligence and many can walk and those who cannot can use wheelchairs or crutches to get around.

Do you think there should be a law which makes doctors accountable for giving complete up to date information to expectant mothers?

Do you know your legal rights in your state?

                                         An expectant parent's guide to birth defects:

FAMILY RESOURCES

The American Congress of Obstetricians and Gynecologists, 409 12th Street, SW, Washington, D.C. 20024,1-800-673-8444, www.acog.org

Chesapeake-Potomac Spina Bifida, Inc., P.O. Box 1750, Annapolis, MD 21404
cpsb@kennedykrieger.org, 1-888-733-0988, www.chespapeakespinabifida.org

Children’s National Health Systems, 111 Michigan Avenue, NW, Washington, DC 20010, 202-476-5000, www.childrensnational.org,

Legal Momentum, 5 Hanover Square, Ste.1502, New York, NY 10004, peo@legalmomentum.org, 202-925-6635, www.legalmomentum.org

National Resource Center, sbaa@sbaa.org, 1-800-621-3141 X35, www.spinabifidaassociation.org

REFERENCES

Center for Disease Control and Prevention, Health Issues and Treatments, Data and Statistics (Aug.5,2014). Retrieved from www.cdc.gov/ncbddd/spinabifida/treatment.html

National Institutes of Health, National Institute of Neurological Disorders and Stroke, Spina Bifida Fact Sheet (Feb.23, 2015). Retrieved from www.ninds.nih.gov/disorders/spina-bifida/detail_spina_bifida.htm

National Institutes of Health, Recent Studies (n.d.). Retrieved from www.clinicaltrials.gov/ct2/results?term=spina+bifida&Search=search

Payne, C. (March 20, 2015) Bill Delivers Accurate Information about Spina Bifida. The Courier Journal. Retrieved from www.courier-journal.com/story/opinion/contributors/2015/03/20/bill-deliver-accurate-information-spina-bifida/25074921/

Special Education Support Services, Strategies for Learning and Teaching (n.d.). Retrieved from www.sess.ie/categories/physical-disabilities/tips-learning-and-teaching

Spina Bifida Pregnancy Screening (Feb.1, 2011). Retrieved from www.news-medical.net/health/Spina-bifida-Pregnancy-Screening.aspx

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