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Spina Bifida : education, prevention, & managing a diagnosis. By Hope Esposito. What is Spina Bifida?. Spina Bifida (SB) means cleft spine in Latin 1 Happens in the womb Baby’s spinal column does not close properly 8 babies are born with SB in the US every day 2
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Spina Bifida:education, prevention, & managing a diagnosis By Hope Esposito
What is Spina Bifida? • Spina Bifida (SB) means cleft spine in Latin1 • Happens in the womb • Baby’s spinal column does not close properly • 8 babies are born with SB in the US every day2 • Most common permanently disabling birth defect in the United States2 Leonardo da Vinci: Studies of the foetus in the womb3
What is spina bifida? • Most common of the neural tube defects • Neural tube contains cells responsible for the formation of: • Spinal cord • Spine • Brain • Neural tube develops during the first 3 to 4 weeks of pregnancy4
Neural tube MayoClinic.com5
Four Types of spina bifida • Occult Spinal Dysraphism (OSD) • Spina Bifida Occulta • Meningocele • Myelomeningocele (Meningomyelocele) or Spina Bifida Cystica
Occult Spinal Dysraphism (OSD) • Spinal cord grows improperly • Can cause serious problems as child grows • Signs a child may have OSD: • A dimple in their lower back • Red marks or dark patches on back • May have tufts of hair or small lumps on back2 • Difficult to detect • Doctor uses special tools to confirm diagnosis2
Spina Bifida Occulta • Occulta means “hidden” • Mildest and most common form of Spina Bifida • One or more vertebrae were not formed correctly • A layer of skin covers or hides the malformation or opening • Present in 10-20% of population • Might not be diagnosed until late childhood, adulthood, or possibly never7 • Rarely causes disability or symptoms • Usually requires no treatment6
Meningocele • A sac of spinal fluid comes through an opening in the baby’s back • Spinal cord and nerves arenot in this sac • Usually little to no nerve damage • Can cause minor disabilities2 and 6
Myelomeningocele • Most serious type of SpinaBifida • Sac of fluid comes through opening in baby’s back • Part of the spinal cord and nerves arein this sac and are damaged • Can cause moderate to severe disabilities including: • Significant bowel and bladder problems • Loss of feeling in legs or feet • Leg paralysis7 Myelomeningocele Illustration7
General Spina bifida complications • Wide range of health issues • From minor physical problems to severe physical and mental disabilities including: • Trouble swallowing • Seizure disorders • Abnormal sensation and paralysis • Newborns with myelomeningocele may develop meningitis, an infection in the meninges6, or protective layers of tissue in the central nervous system • could lead to death9
Complications (cont’d) • Learning disabilities • Difficulty paying attention • Language and reading comprehension problems • Math comprehension difficulties6 Untitled photograph of boy11
Complications (cont’d) • Latex allergies • Skin problems • Gastrointestinal problems • Depression6 • Tendonitis • Obesity • Social problems2 and6
Complications (cont’d) • Chiari II Malformation • Causes Hydrocephalus (excess cerebrospinal fluid in and around the brain)8 • Buildup of fluid creates damaging pressure on the brain and spinal cord • May require surgical implantation of a shunt, or hollow tube, in the brain that will allow for fluid drainage into the stomach8 • Strabismus (often called crossed-eyes) • Avision problem in which both eyes do not look in the same direction at the same time10
Complications (cont’d) • Additional health problems as a result of SpinaBifida: • Scoliosis (abnormal curvature of the spine in an “S” or “C” formation) • Kyphosis (curvature of spine causing a “hunchback” or slouching posture) • Hip dysplasia (an often debilitating, abnormal formation of the hip socket); eventually causing lameness and arthritis • Severely limited mobility; may need to use a cane to walk; have leg braces; or may be confined to a wheelchair for the rest of their lives10
What causes spina bifida? • Current scientific theories: • Acombination of environment and genetics2 • Hyperthermia (mother experiencing fever while pregnant; or exposed to hot tubs, heated Jacuzzis, etc. while pregnant)13 • Mother is obese14 • Mother previously underwent gastric bypass surgery14 • Mother is a diabetic - 2 to 5 times higher incidence of SB compared to general population15
Preventing Spina bifida • The most important link is: Insufficient folic acid!! • Up to 70% of SBcases can be prevented by taking a folic acid supplement10 • Folic acid is a B vitamin, that helps the body make healthy new cells, and keeps blood healthy10 and 12
Preventing Spina bifida • The CDC recommends women of child-bearing age consume 400 to 800 micrograms (mcg) of folic acid every day12 • Majority of neural tube defects happen before the woman even knows she’s pregnant2 • Doctor may recommend higher dose of folic acid if the woman: • Has had a baby with a birth defect affecting the brain or spine • Has a family member with SB • Is obese12
Preventing Spina bifida • Eat plenty of foods high in Folic Acid: • Leafy vegetables • Citrus fruits • Beans (legumes) • Whole grains12 and 16 • And foods enriched with Folic Acid: • Breakfast cereals • Breads • Pastas • White rice12 and 16
Preventing Spina bifida • Eating foods high in folic acid is not enough! • Taking folic acid supplements is absolutelynecessary to prevent Spina Bifida! • The body absorbs folic acid from supplements better than from food16 • Folic acid is water-soluble – this means your body flushes it out with every urination • Therefore, it is very hard to “overdose” on folic acid, or build-up toxic levels in the body12 and 16
suspect your baby may have Spina Bifida? There are 3 tests that can determine SB: 1. AFP screening test • A blood test during the 16th and 18th weeks of pregnancy2 2. Ultrasound • To look forvisible signs of SB, such as an opening of the spine2 3. Amniocentesis • Small amount of fluid is taken from the womb with a thin needle • Doctor will test for protein levels indicating the presence of SB2and 10
What if your baby has spina bifida? • First of all, don’t despair… • Many children born with SB lead full, happy, productive lives • Because of medical advances, approximately 90% of babies born with SBlive to be adults • 80% have normal intelligence • 75% play sports and participate in physical activities
You’re not alone • If your baby is diagnosed with SpinaBifida, there are many resources available to help you. • Clinics: Cincinnati Children’s Hospital The Center for Spina Bifida www.cincinnatichildrens.org/service/c/spina-bifida/default • Camps: Achievement Centers for Children, Camp Cheerful www.achievementcenters.org • Local, national, and online support groups
So Remember… • SpinaBifida is a potentially debilitating neural tube defect • There are four types, causing a wide range of disabilities • SB develops during weeks 3 and 4, when the neural tube is forming • Oftentimes, the woman isn’t aware she’s pregnant at this stage • Most women of child-bearing age should take 400mcg of folic acid daily • Taking folic acid is the most important preventative measure against SB2,4,7 and 12
and Remember… • Eat plenty of foods with folic acid • See your doctor as soon as you think you may be pregnant • The doctor can perform tests to determine if your baby hasSpina Bifida2 and 12 • A diagnosis of SB is not a death sentence – Many children live full lives • You’re not alone! – There are numerous SB resources and support groups
references 1. Mazur-Mosiewicz, A. (2011). Spina bifida. The encyclopedia of neuropsychological disorders. Retrieved from http://search.credoreference.com.proxy.libraries.uc.edu/content/entry/spendiso/spina_bifida/0 2. Brei, T., Payne, C., & Worley, G. (2014). An expectant parents guide to spina bifida. Spina Bifida Association. Retrieved from http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8340123/k.1937/An_Expectant_Parents_Guide_to_Spina_Bifida.htm 3. Leonardo da Vinci. Studies of the foetus in the womb.(c.1513). Retrieved April 4, 2014, from: http://www.wikipaintings.org/en/leonardo-da-vinci/studies- of-the-foetus-in-the-womb 4. Ferrara, MH. (ed). 2010. Spina bifida. Human Diseases and Conditions, Vol. 4, 2nd ed. (1558-1562). Detroit: Charles Scribner’s Sons. Retrieved from http://go.galegroup.com.proxy.libraries.uc.edu/ps/i.do?action=interpret&id=GALE|CX2830200401&v=2.1&u=ucinc_main&it=r&p=GVRL&sw= w&authCount=1 5. MayoClinic.com. (2014). Spina bifida. Riverside Health System. Retrieved from http://www.riversideonline.com/health_reference/Healthy- Baby/DS00417.cfm 6. Office of Communications and Public Liaison. (2013). Spina bifida fact sheet. National Institute of Neurological Disorders and Stroke. National Institutes of Health. Retrieved from http://www.ninds.nih.gov/disorders/spina_bifida/detail_spina_bifida.htm 7. Centers for Disease Control and Prevention. (2013). Spina bifida. National Center on Birth Defects and Developmental Disabilities. Retrieved from http://www.cdc.gov/ncbddd/spinabifida/facts.html 8. Warf, B. (2011). Hydrocephalus. Children’s Hospital Boston. Retrieved from http://www.childrenshospital.org/health-topics/conditions/hydrocephalus 9. Dugdale, D.C., Vyas, J.M., & Zieve, D. (2012). Meninges of the brain. US National Library of Medicine. National Institutes of Health. Retrieved from http://www.nlm.nih.gov/medlineplus/ency/imagepages/19080.htm 10. Mitchell, L.E, Adzick, S.N., Melchionne, J., Pasquariello, P.S., Sutton, L.N., & Whitehead, A.S. (2004). Spina bifida. The Lancet, 364 (9448), 1885-1895. Retrieved from http://dx.doi.org/10.1016/S0140-6736(04)17445-X
references 11. Untitled photograph of boy. Retrieved April 5, 2014, from: https://www.learningally.org/parents-students/learning-ally-approach/dyslexia- resources/homework-help-9-study-tips-for-fewer-tears-and-less-frustration/ 12. Wolff, T. (2012). Folic acid fact sheet. Office on Women’s Health, U.S. Department of Health and Human Services. Retrieved from http://womenshealth.gov/publications/our-publications/fact-sheet/folic-acid.html#c 13. Milunsky, A., Ulcickas, M., Rothman, K.J., Willett, W., Jick, S.S., & Jick, H. (1992). Maternal heat exposure and neural tube defects. The Journal of the American Medical Association, 268(7), 882-885. doi:10.1001/jama.1992.03490070064043 14. Watkins, M.L., Rasmussen, S.A., Honein, M.A., Botto, M.A., & Moore, C.A. (2003). Maternal obesity and risk for birth defects. Pediatrics, 111(5), 1152-1158. Retrieved from http://www.scopus.com.proxy.libraries.uc.edu/record/display.url?eid=2-s2.0- 0037964438&origin=inward&txGid=C23905B708D02F2A3FFF03807491FE74.CnvicAmOODVwpVrjSeqQ%3a1 15. Sheffield, J.S., Butler-Koster, E.L., Casey, B.M., McIntire, D.D., & Leveno, K.J. (2002). Maternal diabetes mellitus and infant malformations. Obstetrics and Gynecology, 100(5), 925-930. Retrieved from http://www.scopus.com.proxy.libraries.uc.edu/record/display.url?eid=2-s2.0- 0036855169&origin=inward&txGid=C23905B708D02F2A3FFF03807491FE74.CnvicAmOODVwpVrjSeqQ%3a8 16. Talaulikar, V. & Arulkumaran. (2011). Folic acid in pregnancy. Obstetrics, Gynaecology & Reproductive Medicine, 21(5), 147-148. Retrieved from http://dx.doi.org/10.1016/j.ogrm.2011.02.005