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         Spina Bifida:     more books (100)
  1. Young People with Spina Bifida and/or Hydrocephalus: Learning and Development by Leonie Holgate, 1985-12
  2. In Utero Surgery Successfully Repairs Baby's Spina Bifida.(Brief Article): An article from: National Right to Life News by Liz Townsend, 1998-09-28

141. Family Village / Spina Bifida
spina bifida See also Latex Allergy. They serve the parents of children with spina bifida, adults with spina bifida and professional who work with them.
http://www.familyvillage.wisc.edu/lib_spin.htm
Spina Bifida
See also Latex Allergy
Who to Contact
Where to Go to Chat with Others

Learn More About It
...
Search AltaVista for "Spina Bifida"
Who to Contact
Spina Bifida Association of America (SBAA)
4590 McArthur Blvd., NW, Suite 250
Washington, D.C., USA 20007-4226
Fax: (202) 944-3295
E-mail: sbaa@sbaa.org
Web: http://www.sbaa.org/ The Spina Bifida Association of America's mission is to promote the prevention of spina bifida and to enhance the lives of all affected. They promote public awareness, and provide funding for research. They have local chapters and a directory is available. Contact the national office at the above address for information concerning a chapter in your locality. They will provide assistance to individuals who wish to start a support group in their locality. The Association provides educational scholarships. Call their 800 number or write to the above address for further information. SBAA publishes a bi-monthly newsletter, SBAA Insights , that is a benefit of membership. They also have brochures including, " Educational Issues among Children with Spina Bifida," "Latex (natural rubber) Allergy in Spina Bifida Patients,"

142. Spina Bifida
charts. NC5472SB $19.95. Sexuality And The Person With spina bifida spina bifida Association Of America Stephen L. Sloan Ph.D. It
http://www.eplibrary.com/spinabifida/
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Children With Spina Bifida
A Parent's Guide
Marlene Lutkenhoff, R.N., M.S.N.
  • A compassionate easy to understand volume that provides parents with information, guidance, and support to help meet their child's needs from birth through childhood. Living With Spina Bifida A Guide For Families and Professionals Adrian Sandler, M.D.
  • This revised edition is a comprehensive guide written for families and professionals who care for children, adolescents, and adults with spina bifida. While covering the key medical, habilitation, and emotional issues of each developmental stage, with special sections written for and by parents of children with spina bifida, it is balanced, accurate, and up to date, with positive and practical advice on daily living, family relationships, building a strong parent-professional partnership, education and work. Includes and updated directory of spina bifida associations, a glossary of useful terms, along with suggestions for further reading and more than 100 helpful line drawings, diagrams, and charts. Sexuality And The Person With Spina Bifida Spina Bifida Association Of America Stephen L. Sloan Ph.D.
  • 143. Samuel Armas - Fetal Surgery For Spina Bifida
    click for larger image Photo While undergoing spina bifida surgery in utero, 21week-old fetus Samuel Armas reaches out of the incision in his mother s womb
    http://www.pagerealm.com/handhope/
    Fetus Undergoes Surgery Inside the Womb at 21 Weeks
    Photo: While undergoing spina bifida surgery in utero, 21-week-old fetus Samuel Armas reaches out of the incision in his mother's womb to grip the finger of Dr. Joseph Bruner.
    Click to View Enlarged Image
    Julie Armas, a 27 year old obstetrics nurse, found out that she was carrying a fetus with spina bifida at 14 weeks gestation. In many cases where spina bifida is detected prenatally, parents opt for abortion (there are no accurate numbers on precisely how often this happens). Julie, however, refused to accept abortion as a "solution" for the child that she and her husband had already decided to name Samuel Alexander. Scouring the Internet for information, the Armas family discovered that a brand new surgery is being carried out on spina bifida-affected fetuses at Vanderbilt University in Nashville, Tennessee ( Fetal Diagnosis and Treatment at Vanderbilt University Medical Center ). Julie was put in touch with Dr. Joseph Bruner, the surgeon whose finger Samuel is clutching in the above photograph. Although the surgery is still very new, it gives hope for preventing or lessening the brain and spinal cord damage associated with spina bifida. The surgery involved removing Julie's uterus by C-section, gently placing the uterus on Julie's belly, then making a tiny incision through which Dr. Bruner operated on the fetus. After the incision was opened, Samuel reached out to grab Dr. Bruner's finger, as shown in the dramatic picture above. An hour later, the surgery was over.

    144. Devon ASBAH
    Information on an association located in Devon, England to help, advise and assist people of all ages who are affected by either or both spina bifida and Hydrocephalus.
    http://myweb.tiscali.co.uk/cpharper/dasbah/
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    145. Spina Bifida: Managing Bowel Dysfunctin In The School Aged Child
    Return to Archive from Sumer 1997 issue. spina bifida Managing Bowel Dysfunction in the SchoolAged Child. by Brenda Benner, Health Center Supervisor, TSBVI.
    http://www.tsbvi.edu/Outreach/seehear/summer97/spina.html
    Return to Archive
    from Sumer 1997 issue
    Spina Bifida: Managing Bowel Dysfunction in the School-Aged Child
    by Brenda Benner, Health Center Supervisor, TSBVI Spina Bifida is a condition in which the vertebra fails to close at some point along the spine. The term "spina bifida" may include a closed lesion (spina bifida occulta) or open lesion (meningocele and myelomeningocele). Many other conditions can happen with this problem such as hydrocephalus, bowel or bladder dysfunction, and paralysis and lack of sensation below the level of the lesion. Each of these conditions may lead to its own set of problems, including visual impairment, bowel or bladder incontinence, deterioration in renal function, lack of mobility, and skin breakdown. Families, in conjunction with their primary care provider and school nurse, play a major role in the prevention of complications and the promotion of health and positive self-esteem in the child with spina bifida. Bowel and bladder complications usually occur with myelomeningocele. Even myelomeningoceles in the low lumbar and sacral areas have some degree bowel or bladder dysfunction because the nerves from this area supply those organs. There are physical problems associated with bladder incontinence, but the emotional issues related to bowel control with the associated, odor, lack of positive self-esteem, and poor body image can lead to severe social problems. Bladder incontinence is approached mostly by a medical model. Prevention of recurrent bladder infections is primary as kidney failure can cause death. Bowel training is not life threatening, and has more of a behavior management approach. Fecal incontinence in the school setting can be morally devastating to a school-aged child.

    146. Understanding Spina Bifida
    Understanding spina bifida is a new, comprehensive, easyto-read book for parents, caregivers or anyone who works with children with spina bifida.
    http://www.bloorviewmacmillan.on.ca/services/spibifid.htm
    ABOUT US SERVICES RESEARCH FOUNDATION ... SITE MAP SEARCH
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    SERVICES - Adult Services
    - Driver Rehabilitation

    - Orthotics

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    ...
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    Understanding Spina Bifida To see excerpts from the book, click here
    En francais, clicquer ici.
    This unique, easily understood book is a must for:
    • parents individuals with spina bifida service-providers and other caregivers
    Understanding Spina Bifida is a new, comprehensive, easy-to-read book for parents, caregivers or anyone who works with children with spina bifida. Through the use of simple medical diagrams and delightful illustrations, the book provides an up-to-date overview of spina bifida and associated conditions. Information is provided about the development of motor skills, independence, self-esteem, learning, language and parenting, as well as medical information regarding neurological, urological and orthopedic issues. This will be a useful educational tool for families and service providers, providing information regarding care, treatment and management of spina bifida from birth to adulthood.

    147. Untitled
    Provides information about spina bifida and promotes the prevention of the disease.
    http://sbawi.org
    Spina Bifida Association of Wisconsin Inc. Spina Bifida Association of Wisconsin SBAWI Happenings SBWins About Spina Bifida ... Contact SBAWI SBAWI's Mission
    The Spina Bifida Association of Wisconsin Inc., is committed to:
    • Enhancing the lives and promoting the dignity and well-being of those affected by spina bifida,
    • Educating the public about the number one, permanent disabler of newborns, and
    • Fostering the prevention of spina bifida.
    Come Join the Fun August 14, 2004
    Sprint for Spina Bifida Registration Form
    SBAWI's Board of Directors
    Mary Person
    , R.N., B.S.N.; President
    Andrew Niebler
    , Esq.; Secretary
    Thomas Tobin
    , CPA; Treasurer
    Jeanne L. Bowman

    Karen Drzewiecki
    , OTR Bruce A. Kaufman , M.D. Scott Kraemer Tara M. Person , Young Adult Representative Karen Rauen , R.N., M.S.N. Kathy F. Weaver , R.N. Rita Flores ; Executive Director SBAWI's Vision The Spina Bifida Association of Wisconsin Inc., will implement all programming and conduct all activities and operations with the goals of:
    • Increasing independence among our teens and adults with spina bifida,
    • Greater participation in society by those with spina bifida, and

    148. Spina Bifida
    Information on spina bifida, includes definition, cause, characteristics, support and more! Definition A physical disability involving
    http://members.tripod.com/~imaware/sb.html
    var cm_role = "live" var cm_host = "tripod.lycos.com" var cm_taxid = "/memberembedded" Check out the NEW Hotbot Tell me when this page is updated
    Definition: A physical disability involving the spinal cord, and often involving the central nervous system.
    Cause:
    SB is caused by a prenatal malformation of the spine, resulting in an opening in the spinal vertebral column.
    Complications:
    Many children with the more severe form of Spina Bifida also have hydrocephaly. Hydrocephaly is a condition in which there is an excess buildup of spinal fluid on the brain. If the fluid is left to accumulate, the child's head will become progressively larger and brain damage will occur. To avoid this accumulation, pliable plastic shunts are surgically inserted beneath the skin to drain off the excess fluid from the brain into the body cavities. Symptoms:
    • loss of sensation from the protrusion to all areas of the body below it (decreased nerve function creates an inability to feel heat, cold, pain, etc.)
    • socks or leotards whould be worn in swimming pools
    • keep child out of direct sunlight and use a sunscreen
    • ensure bare skin is not touching the vinyl or metal of the wheelchair
    • if child crawls, observe area for sharp objects that could cause injury

    149. The SB Center @ Www.ezboard.com
    A message board for those interested in spina bifida.
    http://pub101.ezboard.com/bthesbcenter
    "); else document.write(""); // > Welcome To The SB Center Message Boards
    The SB Center
    Invite Friends! 219 registered members Login Register Your Free Account (Required) Search Help ... Need help logging in?
    Welcome to the SB Center. Thank You for visiting feel free to post anything. If you have any questions, comments, suggestions, or complaints please e-mail me or post it at Technical Support.
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    Forum # Posts Last Comment Moderators Announcements Announcements
    7/27/01 8:14 pm Spina Bifida General Spina Bifida
    This is the place for General Spina Bifida talk. 5/29/04 4:34 pm Spina Bifida Problems
    This forum is about problems you have encountered anywhere. Do you have problems in Home,Transportation,School,amusement parks,etc. We'll be happy to help you, Just a reminder this is not a website problems page. 4/25/04 7:45 am Siblings
    Moderator:
    This is the place for siblings to post things about spina bifida. 1/7/02 1:09 pm Teen Forum
    Moderator: 12/16/03 5:54 pm Spina Bifida This is the place for the whole family to talk about Spina Bifida.

    150. Association De Spina-bifida Et D'hydrocéphalie Du Québec

    http://www.spina.qc.ca/

    Samedi, le 17 avril 2004

    Samedi, le 17 avril 2004

    151. Association De Spina-bifida Et D'hydrocéphalie Du Québec

    http://www.spina.qc.ca/fr/index_fr.htm
    Colloque 2003
    Samedi, le 17 avril 2004

    Moteur de recherche

    ACCUEIL
    Elle regroupe des personnes ayant le spina-bifida et/ou l' SON SYMBOLE, LA MARGUERITE . . . spina-bifida
    Le spina-bifida Les spina-bifida et l' La feuille et la tige spina-bifida . . . mais tout aussi bien, la des personnes qui vivent et fleurissent spina-bifida et l' POUR NOUS REJOINDRE ET/OU POUR FAIRE UN DON:
    5757, av. Decelles, bureau 425
    Courriel: info@spina.qc.ca

    152. Spina-Bifida
    spina-bifida
    http://pages.infinit.net/entramis/spina.htm
    Bonjour... je suis heureuse de partager la présente avec vous... suivez-moi jusqu'au bout!!!! Le 17 octobre dernier, j'ai appris que j'étais enceinte... Quelle joie que cette nouvelle pour notre couple!!! Tout au long de cette grossesse, nous apprenions à vivre avec ce changement et à apprécier de plus en plus ce petit être qui devait transformer notre vie... Notre joie était intense et nous attendions avec impatience l'échographie qui allait sûrement nous révéler le sexe de ce petit bébé qui bougeait en moi... Le 18 février, alors que j'étais à ma 21e semaine de grossesse, je me suis rendue à l'hôpital Ste-Justine de Montréal pour cette fameuse échographie... Nous allions apprendre la pire nouvelle de notre vie... Notre fille était atteinte d'un méningocèle et d'un hydrocéphalie, malformation du tube neural... À partir de cet instant, pour nous, il n'y avait qu'un seul choix : l'arrêt de grossesse... nous ne pouvions mettre au monde un enfant qui souffrirait toute sa vie d'un handicap grave!!! Les jours suivants furent sûrement les pires de nos vies... J'ai dû accoucher par voie naturelle d'un bébé qui devait mourir...

    153. Department Of Obstetrics And Gynecology
    Department of Obstetrics and Gynecology. FETAL DIAGNOSIS THERAPY. FETAL DIAGNOSIS THERAPY. Vanderbilt University Medical Center.
    http://www.mc.vanderbilt.edu/root/vumc.php?site=VUMCOBGYN

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