MEETING THE NEEDS OF CHILDREN AND FAMILIES:

Inclusion and Spina Bifida

SCENARIO
You are working as an ECE in the school age program. Sonia (age 7) has just entered your program. Sonia has Spina bifida, and uses a wheel chair; she also has a shunt to lessen fluid on the brain. She is very bright and outgoing, her language skills are above average. Her parents are bilingual, and speak to Sonia in both English and French. They are new to the Toronto area, and ask your advice about services in the area. They are especially interested in sports and recreation programs.

WHAT IS SPINA BIFIDA?

A birth defect Occurs early on in pregnancy when the neural tube is closing. Two types of Spina bifida Occulta and Manifesta First detection occurs in ultrasounds and Maternal Serum AFP (alpha-fetoprotein)Testing spinal cord protrudes and is not covered by skin, or skin can be present but distorted Vertebrae do not form properly paralysis is typically seen in the spinal nerves involved or effected. 1 in 1000 pregnancies Folic acid is highly recommended by physicians to decrease chances of this occurring Cause is still unknown

SIGNS AND SYMPTOMS

SPINA BIFIDA OCCULTA:
Mildest form Occulta means hidden, so the defect is covered by skin - not open Usually no health problems associated Spinal cord usually not affected - hair patch, birthmark or Mongolian spot, dimple on or around the defect May have symptoms if covered defect is serve; -Lipomyelomeningocele & Lipomeningocele, a tethered spinal cord attached to benign fatty tumor - Thickened filum terminale, the end of the spinal cord is too thick

TYPES OF SPINA BIFIDA

-Fatty filum terminale, there is a fatty lump at the inside end of the spinal cord -Diastematomyelia & Diplomyelia, the spinal cord is split in two or more, usually by a piece of bone or cartilage - Dermal sinus tract (with involvement of the spinal cord) the spinal canal and the skin of the back are connected by what looks like a band of tissue. Severe symptoms of SBO are; -Pain in the back or legs -Weakness in legs -numbness in back or legs -deformities in the arms legs and backs -changes in bowel and bladder function

SIGNS AND SYMPTOMS

Spina Bifida Manifesta
Severest form of Spina bifida Two types of SBM - Meningocele & Myelomeningocele involves the meninges, the membranes responsible for covering and protecting the brain and spinal cord Meningocele, -Meninges push through a hole in the vertebrae creating a sac Myelomeningocele -Push through of meninges may also push out spinal cord, causing an accumulation of fluid around the brain - requires a shunt, a tube to drain fluid

TYPES OF SPINA BIFIDA

Mylomeningocele is most common form of Spina bifida -some form of paralysis - severity depends on opening location on the spine -higher is more severe May see nerves coming out of childs back or swelling on the spine Nerve damage Little or no feeling over arms legs, or feet Little or no control in the arms legs or feet Seizures or vision problems, related to brain fluid build up Scoliosis -curve in the spine Possible latex allergy Problems sleeping on back Damage to bladder and/or bowel

DOES SPINA BIFIDA AFFECT THE CHILD IN OTHER WAYS?

Most children have no other identified cognitive delays, Chance of Dyslexia Chance of ADHD Learning difficulties

DIAGNOSIS AND TREATMENT

How is Spina Bifida diagnosed?
AFP test (The alphafetoprotein), performed between the 16th and 18th weeks of pregnancy -measures how much AFP, produced by is in mother's bloodstream -often repeated to avoid false results Ultrasounds Amniocentesis -needle used to extract fluid from womb, tested for AFP MRI Scan (magnetic resonance imaging) CT Scan (computed tomography) X-ray.

What is the treatment of Spina Bifida?

Spina bifida occulta require no treatment Meningocele, have operation during infancy -push the meninges back -close the hole in vertebrae - no other health problems later unless there is nerve tissue involved with the sac. Myelomeningocele, need surgery within 2 days of birth -doctors push spine back into vertebrae -close the hole to prevent infection and spine Shunt for hydrocephalus

KNOWLEDGE OF THE CHILD & THE CHILDS NEEDS

What is known?
Wheel chair -accessibility Hydrocephalus -requires shunt for brain fluid drainage Language skills developing typically Bilingual -English & French New to Area -Toronto Lover of sports

Possible Needs
Auditory problems, learning difficulties due to Shunt and hydrocephalus May have little or no use of limbs Possible or occasional Back or leg pain Bladder or bowel issues Scoliosis -curve in the spine Possible latex allergy Problems sleeping on back Possible seizures due to hydrocephalus Deformities in limb Lump or scar on back

PARENTAL/CAREGIVER NEEDS
Support Groups -Children with spina bifida -families dealing with spina bifida -discussions groups -cultural organizations Language barrier -one parent one language -untranslatable words Community Resources/Agencies

NEEDS OF THE EDUCATOR

Be prepare to see deformities, even if she might not have any Be prepared for possible learning difficulties, or cognitive delays Prepare activities favourable to the child -sports centered -introducing French -talk about diversity, special needs Be prepared for behavioral problems -shy, distant -crying -non verbal

MODIFYING THE ENVIRONMENT

Large spaces between large equipment in the rooms Velcro boards Enlarged utensils Visual aids Comfy corner Padding for cot Modified activities Sonia centered activites

RESOURCES
"Pregnancy week by week." Fetal development: The first trimester. N.p., n.d. Web. 15 Mar. 2014. <http://www.mayoclinic.org/healthyliving/pregnancy-week-by-week/in-depth/prenatal-care/art20045302?pg=1>. ("Spina Bifida." - Causes, Symptoms, Treatment, Diagnosis. N.p., n.d. Web. 15 Mar. 2014. <http://bodyandhealth.canada.com/channel_condition_info_d etails.asp?disease_id=203&channel_id=203&channel_id=9&rel ation_id=10860>.) http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.82772 05/ http://www.mdperinatal.com/Maternal-Serum-Alpha-fetoproteinScreening http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.82772 05/ Piatt, Joseph. "Spina Bifida." KidsHealth - the Web's most visited site about children's health. The Nemours Foundation, 1 Oct. 2011. Web. 15 Mar. 2014. <http://kidshealth.org/parent/system/ill/sp

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