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
Extractions: 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,"
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/
Extractions: 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.
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/
Extractions: 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.
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/
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
Extractions: from Sumer 1997 issue 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.
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
Extractions: En francais, clicquer ici. This unique, easily understood book is a must for: 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.
Untitled Provides information about spina bifida and promotes the prevention of the disease. http://sbawi.org
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
Extractions: 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
Extractions: 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...
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
