21. Development Neurosurgery About 90 percent of children born with spina bifida have hydrocephalus. No single cause has been found, but genetics and environment as well as a folate http://www1.wfubmc.edu/neuro/Diseases and Conditions/Development Neurosurgery.ht

Neurosciences Diseases/Conditions Genetic Disorders Movement Disorders ... Diseases and Conditions Development Neurosurgery Developmental Neurosurgery Developmental neurosurgery includes a wide range of disorders that include hydrocephalus, spina bifida, chiari malformation and spyringomyelia and which may overlap. Hydrocephalus Definition While hydrocephalus may be commonly called ‘water on the brain,’ it is actually the abnormal accumulation of cerebrospinal fluid inside the four spaces or ventricles inside the brain. This accumulation causes the ventricles to swell and compress the surrounding tissue, which can harm the brain and have an impact on both physical and cognitive development. Cerebrospinal fluid is extremely important to the function of the brain and therefore the entire body. It normally flows in pathways from one ventricle to the next and outside the brain, down the spinal cord and into the bloodstream. The fluid acts as protection for the brain and spinal cord, delivers nutrients, removes waste and compensates for changes in blood volume within the brain. Congenital hydrocephalus occurs in about one or two per 1000 births. The cause often cannot be determined, possibly environmental factors during development or genetic predisposition. Premature babies can be at risk for hydrocephalus because their brains are still developing.

22. The Northcott Society International Federation for spina bifida and hydrocephalus Provides current and relevant genetics information to individuals and family members http://www.northcott.com.au/LinksPage1.html

Home Contact Site Map Donate Useful Web Links Welcome to our links list. The websites suggested have been identified by Northcott as informative and varied source of information for our clients and service providers. Northcott is not responsible for the content of any external internet sites. These links do not imply any endorsement by Northcott. Clicking on any link will take you to the external site in a new browser window. Please email enquiry@northcott.com.au if you wish your site to be included or if you experience any problems. You can access the links from the below Links Categories Disability Specific Sites Spina Bifida Sites Government Services Access ... Interstate Organisations Disability Specific Sites Back to top Autism: Autism Association of NSW www.autismnsw.com.au Cerebral Palsy: The Spastic Centre www.thespasticcentre.org.au Scope www.scope.org.uk The Australian Cerebral Palsy Association www.acpa-inc.org.au Osteogenesis Imperfecta: Osteogenesis Imperfecta Foundation www.oif.org Hydrocephalus: The Hydrocephalus Association www.hydroassoc.org

23. SB&H - Research Support And Monitoring Children with spina bifida and hydrocephalus (SBH) have a distinctive pattern Center for Human genetics Duke University Medical Center (DUMC) has an http://www.sbhao.on.ca/research.asp

Main Menu Animation Information Support N.P.H. Online Community Information Support Folic Acid Latex Allergy Online Community Research Awareness Care Advocacy Options Give Online Fundraising Annual Report About Us Our Mission Membership Board of Directors Ambassador Annual Report Contact Us Research Support and Monitoring Research Links Search Research The Association responds to requests to support research that will improve the quality of life for all individuals with spina bifida and/or hydrocephalus and their families. We work in partnership with the Hospital for Sick Children, the Bloorview MacMillan Centre, Easter Seal Society, McMaster Health Sciences Centre and other large research facilities by providing mailings, participation in focus groups and funding as appropriate. The SANDI Project S pina Bifida - A ssessment of N eurobehavioral D evelopment, I nternational The SANDI Project is a collaborative effort between The Hospital for Sick Children in Toronto, the University of Texas - Health Science Center, Baylor College of Medicine and Shriners Children's Hospital. The project aims to identify genetic, environmental, and central nervous system factors responsible for the variations in the neurobehavioural outcomes of children with this condition. For further details visit The SANDI Project online.

24. Neural Tube Defects However, studies have shown that genetics and environment, One main complication of spina bifida is hydrocephalus, or fluid on the brain. http://www.stayinginshape.com/3osfcorp/libv/k36.shtml

BROWSE FOR HEALTH INFORMATION BY TOPIC: HEART CANCER WOMEN MEN ... ALL TOPICS A - Z Neural Tube Defects Neural tube defects (NTDs) are serious birth defects (Read about " Birth Defects ") with symptoms that range from mild to severe impairment. They are caused by incomplete development of the brain, spinal cord and/or their protective coverings. (Read about the brain and its anatomy in " Brain/Mental Health/Nervous System ") This occurs when the fetus' spine fails to close properly during the early stages of pregnancy. The Spina Bifida Association of America (SBAA) says spina bifida is the most common NTD. Some other types of NTDs include anencephaly and encephaloceles. While there is no cure for any of these, much research is being done to determine what causes them and how to prevent them. Doctors and scientists are also working to improve surgeries and other treatments for those affected by these disorders. One thing the March of Dimes (MOD), SBAA and other groups agree on is the need for women to take folic acid supplements from before they are pregnant. SBAA says that some studies have shown that if all women took appropriate folic acid supplements before and during pregnancy NTDs could be reduced by close to 75 percent. (Read about " Pregnancy and Nutrition ") Follow the links below for more information.

25. EMedical - Health Information spina bifida hydrocephalus association of south australia practically all the aspects of spina bifida, from the genetics to issues with sport. http://www.emedical.com.au/default.asp?pageID=5&TopicID=112

26. Spina Bifida nutrition in the development of spina bifida. genetics also seems to play a role. Which form of spina bifida is involved? Is hydrocephalus present? http://www.wcax.com/global/story.asp?s=2314420&ClientType=Printable

27. Redirect Duke Center for Human genetics studies neural tube defects (NTDs) to determine their spina bifida and hydrocephalus Association of Canada (SBHAC) http://www.chg.duke.edu/patients/neural.html

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28. Genomics|Info|Reports|Research|Spina Bifida Redirect Keywords spina bifida, folate, genetics, epidemiology, interaction of the Italian Federation of spina bifida and the hydrocephalus Association. http://www.cdc.gov/genomics/info/reports/research/spina.htm

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29. FIRSTConsult - Sdfdsf Children with spina bifida and hydrocephalus often have learning problems, Committee on genetics. Folic acid for the prevention of neural tube defects . http://www.firstconsult.com/?action=view_article&id=1010381&type=101&bref=1

30. Lorber-references.html MH Anencephaly/genetics MH - hydrocephalus/*genetics MH - spina bifida Occulta/genetics SO - Z Kinderchir 1984 Dec;39 Suppl 294-5 AU - Jackson PH AU http://www.indiana.edu/~pietsch/lorber-references.html

web contact: pietsch@indiana.edu go back to ShuffleBrain Main Menu The Late Emeritus Professor John Lorber Neurological Publications Photo reproduced from The University of Sheffield Newsletter go to ShuffleBrain Main Menu web contact: pietsch@indiana.edu

31. Human Genetics - NHLS - WITS hydrocephalus occurs in about 80% of children with spina bifida. It is due to an abnormality that prevents free circulation and drainage of the http://www.health.wits.ac.za/gen/genet_disorders_linsks-z.htm

Sanfilippo syndrome Sanfilippo syndrome results from an inherited inability to degrade heparan sulphate, a complex carbohydrate that forms part of connective tissue. The disease has an autosomal recessive mode of inheritance. Physical abnormalities associated with this condition are less pronounced than those observed with other mucopolysaccharidoses, but the mental retardation is usually more severe. Sanfilippo syndrome can be caused by a deficiency of any one of four distinct lysosomal enzymes. The urine from affected individuals contains increased levels of partly-degraded heparan sulphate which, when observed, suggests the diagnosis. A definitive diagnosis requires the demonstration of a deficiency of one of the four enzymes involved in heparan sulphate degradation. At present, our laboratory can only assay one of the four enzymes viz. that which is deficient in Sanfilippo type B. Sample required: Approximately 30ml of freshly-collected urine and 13ml of whole blood (i.e. 6.5ml drawn into two yellow-capped vacutainer tubes, containing ACD anticoagulant), to reach the laboratory within 24 hours of collection. Time required for results to be ready: Approximately one week Contact telephone number: Scoline apnoea Scoline apnoea refers to the prolonged period taken by a patient to regain the ability to breath after being given a standard dose of the muscle relaxant, scoline, during surgery. The propensity to have the condition is inherited in an autosomal recessive manner. Scoline apnoea is more common in Caucasians because of the increased frequency of the so-called atypical variant of the gene in this group. Individuals at risk, as well as carriers of Scoline apnoea, can be identified by assaying and characterising (dibucane and fluoride numbers) the butyryl cholinesterase present in their serum. Individuals at risk are advised to wear a bracelet with a message alerting health care workers to the danger of administering scoline.

32. Entrez PubMed What s new in the genetics of hydrocephalus and spina bifida? The Casey Holter Memorial Lecture 1993. Donnai D. Regional genetics Service, St. Mary s http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8

33. Entrez PubMed The role of genetics in understanding hydrocephalus and spina bifida. An update. Jouet M. University Department of Medicine, Addenbrooke s Hospital, http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9

34. Resources bullet, Handwriting for the child with spina bifida and hydrocephalus bullet, Types of spina bifida. bullet, genetics and folic acid http://www.spinabifida.org/resources.htm

Resources The following books and videos are available for loan from SBH Queensland. Books Spina Bifida Answering Your Questions about Spina Bifida by Children’s National Medical Center, Washington DC Children with Spina Bifida: A Parent’s Guide by Marlene Lutkenhoff Living with Spina Bifida: Shared Experiences by Cumberland College Living with Spina Bifida: A Guide for Families and Professionals by Adrian Sandler Spinabilities: A Young Person’s Guide to Spina Bifida by Marlene Lutkenhoff Hydrocephalus Hydrocephalus: Patient Information Booklet by Medtronic PS Medical Schooling Developing Inclusive School Communities: strategies for parents by Fae Kennish One of the Kids: Educating Children with and without disabilities together, in the same classes and schools A guide for parents by Wendy Stroeve Children with Spina Bifida and/or Hydrocephalus at School by ASBAH UK Self-esteem and skills The Straight Talk Manual: A Self-Esteem and Life Skills Workbook for Young People by Diane Brokenshire Life Skills Activities for Secondary Students with Special Needs by Darlene Mannix Social Skills Activities for Secondary Students with Special Needs by Darlene Mannix Arnold Chiari Malformation The Chiari Malformation: An Informational Pamphlet for Parents by Jacqueline Frost Parenting After the Tears: Parents Talk About Raising a Child with a Disability by Robin Simons Baby and Child by Penelope Leach Children’s Storybooks My Friend Andrew by Grace Moulton Marty and his Red Wheelchair by Marty van der Kley

35. Jays Pitcher's Family Rally Back From Spina Bifida There s no single cause of spina bifida but nutrition, genetics and environment all Eighty per cent of babies with spina bifida also have hydrocephalus, http://www.canoe.ca/Health9905/31_spinabifida.html

[an error occurred while processing this directive] Quick Link SLAM! Sports Jam! Showbiz CNEWS Money C-Health Lifewise AUTONET.CA Newsstand Home Top Stories Health Topics Health Assoc. ... Spin Doctors TOOLS: Disease Database Drug Database Alt. Health Dictionary ... Encyclopedia Monday, May 31, 1999 Jays pitcher's family rally back from spina bifida By MARLENE HABIB The Canadian Press TORONTO (CP) As a pitcher, Bill Risley of the Toronto Blue Jays has keen balance. Risley's young son Kaleb, on the other hand, has trouble with balance even with splints. Kaleb has spina bifida , a neural-tube defect that will affect about one in 750 children born in Canada this year. Risley and his wife Brenda consider themselves lucky even though they were thrown yet another medical curve. Risley has a history of back problems. A few years ago, their daughter Sage scalded her throat when she put her mouth over a steaming pot of tea. The relief pitcher said an ultrasound on his pregnant wife revealed Kaleb's spine wasn't forming properly. But the early diagnosis gave the couple time to prepare for the challenges ahead. Toronto Blue Jay pitcher Bill Risley winds up for a pitch during Blue Jays spring training camp in Dunedin, Florida, Thursday, Feb. 29, 1996. Risley's sion, Kaleb, was born with spina bifida. (CP PHOTO/Fred Chartrand)

36. Spina Bifida Clinic A History Of Spina Bifida Spina Bifida Is A Genetic counselors are an excellent resource for families who may be considering This web site offers information about spina bifida, hydrocephalus, http://www.dor.kaiser.org/genetics/OurServices/SpinaBifidaMain.html

Spina Bifida Clinic A History of Spina Bifida Spina bifida is a common birth defect affecting approximately 1 out of every 1,000 babies born in the United States. Until advances in neurosurgery (ventricular shunting) and urology (clean intermittent catheterization) in the late 1950’s and 1960’s, many babies with spina bifida did not survive. Today, it is expected that the majority of individuals born with spina bifida will have a normal life expectancy. Frequently Asked Questions WHAT IS SPINA BIFIDA? WHO IS AT RISK OF HAVING A BABY WITH SPINA BIFIDA? HOW MANY PREGNANCIES ARE AFFECTED BY SPINA BIFIDA? CAN ANYTHING BE DONE TO PREVENT SPINA BIFIDA? ... COMMON CONCERNS NEUROLOGICAL CONCERNS WHAT IS A SHUNT? WHAT ARE SIGNS AND SYMPTOMS OF SHUNT FAILURE? WHAT IS THE TREATMENT FOR SHUNT FAILURE? WHAT IS A CHIARI MALFORMATION? ... WHAT ARE SIGNS AND SYMPTOMS OF TETHERED CORD SYNDROME? ORTHOPEDIC CONCERNS WHAT IS THE RELATIONSHIP BETWEEN SCOLIOSIS/KYPHOSIS AND SPINA BIFIDA?

37. Spina Bifida genetics. spina bifida seems to run in some families. Sometimes a shunt to control hydrocephalus is placed during the operation on the spinal cord. http://www.cnn.com/HEALTH/library/DS/00417.html

International Edition MEMBER SERVICES The Web CNN.com Home Page World U.S. Weather ... Autos SERVICES Video E-mail Newsletters Your E-mail Alerts RSS ... Contact Us SEARCH Web CNN.com In association with: WOMEN'S HEALTH Pregnancy Premature birth Fetal alcohol syndrome Spina bifida Preeclampsia ... Placenta previa INFORMATION CENTERS: Pick a category Health Centers Family Health Men's Health Women's Health Children's Health Seniors' Health Working Life Pain Management Condition Centers Immune System Allergy Alzheimer's Arthritis Respiratory System Cancer Endocrine System Digestive System Heart and Blood Infectious Disease Mental Health Note: All links within content go to MayoClinic.com Diseases and Conditions Spina bifida From MayoClinic.com Special to CNN.com Overview Spina bifida is a serious birth defect that occurs when the tissue surrounding the developing spinal cord of a fetus doesn't close properly. It's part of a group of birth defects called neural tube defects, which affect the embryonic structure that eventually develops into the baby's brain, spinal cord and tissues that enclose them. Under normal circumstances, the neural tube forms in the developing baby in the first few weeks of pregnancy and closes by the 28th day after conception. Later, the top of this tube becomes the baby's brain, and the remainder of the tube becomes the baby's spinal cord. In babies with spina bifida, an area along the lower end of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones that make up the backbone (vertebrae). This can also occur in the middle or upper end of the spine, but it's less common.

38. Chapter 24: Links | Course Companion For Children With Disabilities, Fifth Editi on spina bifida, hydrocephalus, Chiari malformation, genetics, life with spina bifida, Educating the student with spina bifida and hydrocephalus. http://textbooks.brookespublishing.com/batshaw/chapters/24/links.htm

1: Chromosomes and Heredity 2: Birth Defects 3: Growth Before Birth 4: Having a Baby 5: The First Weeks of Life 6: Premature and Small-for-Dates Infants 7: Substance Abuse 8: HIV Infection in Children 9: Nutrition 10: Vision 11: Hearing 12: Communication 13: The Brain and Nervous System 14: Muscles, Bones, and Nerves 15: Mental Retardation 16: Down Syndrome 17: Fragile X Syndrome 18: PKU 19: Dual Diagnosis 20: Pervasive Developmental Disorders 21: Attention Deficits and Hyperactivity 22: Specific Learning Disabilities 23: Cerebral Palsy 24: Neural Tube Defects 25: Epilepsy 26: Traumatic Brain Injury 27: Feeding 28: Dental Care 29: Early Intervention 30: Special Education Services 31: Promoting Adaptive Behavior 32: Technological Assistance 33: Rehabilitation 34: Exercise, Sports, and Recreation 35: Ethical Dilemmas 36: Providing Family-Centered Services 37: Future Expectations 38: Health Care and Finance 24: Cerebral Palsy Links Position statement from the American Academy of Pediatrics on folic acid for the prevention of neural tube defects (NTDs). A prevention model and resource guide with information about NTDs, folic acid, community involvement, program development, examples of program development, a glossary, and more. Spina bifida fact sheet from National Information Center for Children and Youth with Disabilities (NICHCY).

39. Special Kids Today – Spina Bifida A New Hope In addition, most children with spina bifida also develop hydrocephalus, “There is so much we don’t know about genetics and how this occurs and why,” http://specialkidstoday.com/resources/articles/spinabifida.htm

Search the Network: news resources community diaries ... shop Spina Bifida A New Hope By Kelly Burgess Angeline Gonzalez-Abreu of Hollywood, Fla., is a bright, beautiful, chatty 2-year-old. She’s also strong-willed and determined, qualities that will stand her in good stead as she faces the challenges of growing up with spina bifida. “I think Angie is very special, but I don’t want her to think she’s ‘special needs’ because I don’t want her to view herself in that way,” says Angeline’s mother, Emily Gonzalez-Abreu. “I want her to keep that strong urge to try and to succeed.” According to the Spina Bifida Association of America, spina bifida is the most commonly-occurring permanently disabling birth defect, affecting one of every 1,000 newborns. In spite of that, spina bifida has a short history simply because until just 15 or 20 years ago, children with spina bifida rarely lived past childhood. However, in that time, advances in surgical care, infection control and an increased focus on adaptive life skills have allowed children with spina bifida to grow into adults with spina bifida. And they are adults who are not disabled but able and willing to meet the challenges of living in a world that has to be continually educated about adapting to all abilities. About Spina Bifida Spina bifida is a neural tube defect that occurs early in pregnancy, often before a woman even realizes she is pregnant. At some point during this time in the embryo’s development, the neural tube (which develops into the brain, spinal cord and vertebral column) fails to form properly, leaving the spinal cord exposed. The result is varying degrees of paralysis and loss of sensation.

40. NeLH - Clinical Genetics spina bifida — due to failure of closure of the posterior (caudal) neural tube. Significant complications including hydrocephalus, Arnold Chiari http://libraries.nelh.nhs.uk/genepool/viewResource.asp?uri=http://libraries.nelh

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