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Spianabifidia

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Jennifer Chora

Spinabifidia, also known as spina bifida, is a birth defect where the spine and spinal cord do not properly develop. It can range in severity from a mild form where there are no symptoms to a more severe form where the spinal cord and membranes protrude out of the open spine. Children with more severe forms may experience paralysis, nerve damage, and other issues. Early intervention and treatment is important to help support development and manage complications. Parents and teachers play an important role in caring for and educating children with spinabifidia.

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SPIANABIFIDIA
WHAT IS SPINABIFIDIA Spinabifidia comes from the word for “split spine” in Latin. It is one of the class of serious birth defects, called neural tube defects (NTDS) ,which involve damage to the bony spine and the nervous tissue of the spinal cord. Some vertebrae of the spines don’t close properly during development and the spinal cords nerves don’t develop normally. They are exposed and can be subjected to further damage. www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf
Types Of Spinabifidia And Symptoms The two forms of Spinabifidia are: - Spinabifidia occult - Spinabifidia manifesta Spinabifidia occulta is the mildest form of Spinabifidia . Most children with this type of defect never have any health problems and the spinal cord is often unaffected. The spinal cord does not protrude through the skin, although a patch of hair, a birthmark or a dimple may be present on the skin over the lower spine. www.kidshealth.org/parent/system/ill/spina_bifid.html
Spinabifidia manifesta-1 Meningocele Meningocele involves the meninges, the membranes responsible for covering and protecting the brain and spinal cord. If the meninges push through the hole in the vertabrae, the sac is called a meningocele. The sac is often covered by a thin layer of the skin. and can be small as a grape or as large as a grapefruit Myelemeningocele is the most severe form of Spinabifidia. It occurs when the menings push through the hole in the back which results in the spinal cord pushing through Babies with myelemeningocele have a sac like mass that bulges from the back, but a layer of skin may not always cover it. In some cases the nerves and the spinal cord can be exposed. www.kidshealth.org/parent/system/ill/spina_bifid.html
Spinabifidia And The Effects Due to the abnormal development of and damage to the spinal cord, a child with myelominingocele typically has some paralysis. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening is the more severe the paralysis tends to be. Loss of skin sensation below the level of the defect: there is loss of awareness of touch , pain, pressure and heat or cold in those areas of the skin normally innervated by nerves which are involved in the spinal cord defect . Muscle weakness below the level of the defect: The extent of the muscle weakness is related to the level of the spinal cord defect. Because the defect rarely reaches the level of the upper back, the muscle weakness is nearly always confined to the lower and lower trunk . www.kidshealth.org/parent/system/ill/spina_bifid.html
Spinabifidia And The Effects Weakness of the muscle in the wall of the Bladder and Bowel: The bladder and bowel problems usually result in urinary and bowel incontinence. These difficulties arise from -weakness of the muscles in the walls of these organs, which normally contract to expel their contents. - Weakness, tightness, or failure of the of relaxation of the circular muscles. Associated Defect of Hydrocephalus: Close to 70% of the infants with Spinabifidia develop a defect known as hydrocephalus. This may cause a rapid enlargement of the head resulting from the abnormal accumulation of fluid within the cavities. (Chester A.Swinyard, M.D.PhD Spinabifidia pg13)
Why children suffer from Spinabifidia what the possible causes The causes of spin bifida are largely unknown. Some evidence suggests that genes may play a role, but in most cases there is no familial connection . Spinabifidia occurs at the end of the first month of pregnancy when the two sides of the embroy’s spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the back. The condition usually is detected before a baby is born and treated right away. www.kidshealth.org/parent/system/ill/spina_bifid.html
Spinabifidia and the Developmental Effects (Physical) The effects of Spinabifidia on development vary according to the type, location and severity of the condition. Generally defects which are higher on the spine produce a greater risk of paralysis and other complications. Problems associated with Spinabifidia on development of a child typically include: www.kidshealth.org/parent/system/ill/spina_bifid.html Physical: Toileting: All children vary in the rate at which they accomplish toileting skills. Children without Spinabifidia can generally manage their own toileting between the ages of two and five. For children with spinafidia there are factors that influence their learning. Impairment of the nerve supply to and from the excretory systems result in the workings of bowel and bladder, weak or paralysed leg and hip muscles make it hard to move to and from the toilet as well as getting dressed and undressed, wearing items such as calipers can make toileting difficult for children with Spinabifidia. Assisting a child with Spinabifidia in toilet training by providing stepping seats which include handles to assist with getting on and off the toilet and provide support during toileting. Gwynnyth Llewellyn and Lorraine Green-Living with Spinabifidia pg 70-71
Spinabifidia and the Developmental Effects (Physical) - Eating : : It cannot be emphasised enough that children with spinabifidia should be treated just like other children. This can be done by ensuring that tasks are not being symplified unnecessarily, assistance is given only when needed Behavioral standards are not lowered unnecessarily Weak or paralysed leg and hip muscles make it hard to move in and out of a bath .. Loss of sensation means the child cannot feel the water temperature and may be unaware of where the legs and body are in space. For the child with poor sitting and balance, one or both hands may be needed for propping or support and this can interfere with using utensils and equipment. Some children with spinabifidia have poor hand function resulting in a weaker grip or decreased finger dexterity which can make mealtime and personal care tasks harder. Gwynnyth Llewellyn and Lorraine Green-Living with Spinabifidia pg 53
Spinabifidia and the Developmental Effects (Social) Social: In many cases, infants and children with Spinabifidia require early and frequent hospital visits. This can interrupt normal social development. The challenge is to balance medical needs with the need to let a child develop into a confident, self sufficient and independent adult. The child may not be able to learn new skills due to limited movement or may not want to assist, or try to learn, when there are others to perform the tasks. Children with disabilities are often ‘babied’ by many even their peers. This suggests to the child and others that they are not capable of doing the tasks, and consequently are not given the chance to try. Because of physical and social factors children with Spinabifidia are more likely to have problems with learning new tasks than other children.. It is said that children with Spinabifidia are passive and lack the motivation to be independent. A child with Spinabifidia may need extra encouragement to help overcome the limitations of decreased strength, poor sensation and difficulties with movement and balance . Gwynnyth Llewellyn and Lorraine Green-Living with Spinabifidia pg 8
Spinabifidia and the Developmental Effects (Emotional) Children with special needs of any type often rebel against their disabilities when they realise it cannot be wished away. They become depressed, deficant or withdrawn. Early attention to these issues through peer support groups/or counciling is often critical to healthy emotional development. www.spinabifidiamoms.com/english/about.html
Spinabifidia and the Developmental Effects (Language) In some cases, children with Spinabifidia experience learning problems. They have difficulty with paying attention, expressing or understanding language, and grasping reading and math. Early intervention with children who experience learning problems can help considerably to prepare them for school. www.kidshealth.org/parent/system/ill/spina_bifid.html
Treatment for Spinabifidia In some cases of Spinabifidia manifesta, treatment depends on the type of spina bifida and its severity. -Babies with meningocele usually have an operation during infancy in which doctors push the meninges back and close the hole in the vertabrae. Many will have no other health problems later unless there is nerve tissue involved with the sac. --Babies with myelomeningocele need more immediate attention and often have surgery within the first 1 to 2 days after birth. Doctors push the spine back into the vertabrae and close the h le to prevent infection and protect the spine Some children need subsequent surgeries to manage problems with their feet, hips and spine . www.kidshealth.org/parent/system/ill/spina_bifid.html
Caring for Children with Spinabifidia Parents of children with spina bifidia receive support from a medical team that may include several doctors such as: Neurosurgeons Urologists Orthopedic surgeons Rehabilitation specialists General pediatricians Nurse practioner Physical and occupational therapists Social worker http://kidshealth.org/parent/system/ill/spina_bifida.html
Successful Inclusion for Children with Spinabifidia Teaching a student with Spinabifidia requires all the normal teaching skills. Teachers must possess good communication skills and a willingness to work as team with parents, therapists and students. www.asbha.org.au/educatingthechildwithspinabifidia.html Some children need special requirements such as special braces e.g. ankle foot orthosis, crutches or wheelchairs. To help support the child services can work effectively with parents and families to make special modifications to best support the child. As well as having stairs provide a walk way for children that require a wheelchair, -Provide special care workers within services to support the children and assist them with certain tasks which children require help with. Research and find social networks to support the illness such as having connections with neurosurgeons, ,Urologists, Orthopedic surgeons, Rehabilitation specialists, General pediatricians, Nurse practioner, physical and occupational therapists, social worker
Successful Inclusion for Children with Spinabifidia Provide a variety of information booklets, articles, books support networks for children with Spinabifidia for parents. Build effective communication with families to find out more information about the illness and the child to best support and make the child feel comfortable and secure. Researching different learning strategies to support the child’s cognitive and language skills as well as providing special care and assistance in tasks.
Bibliography Gwynnyth Llewellyn and Lorraine Green. 1987 Living with Spinabifidia Chester A. Swinyard, M.D., Ph. D.1980. The Child with Spinabifidia www.asbha.org.au/educatingthechildwithspinabifidia.html www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf www.kidshealth.org/parent/system/ill/spina_bifid.html www.spinabifidiamoms.com/english/about.html
References Gwynnyth Llewellyn and Lorraine Green. 1987 Living with Spinabifidia (pg 53) Chester A. Swinyard, M.D., Ph. D.1980. The Child with Spinabifidia (pg 13) < www.asbha.org.au/educatingthechildwithspinabifidia.html > < www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf > < www.kidshealth.org/parent/system/ill/spina_bifid.html > < www.spinabifidiamoms.com/english/about.html >

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Spianabifidia

  • 2. WHAT IS SPINABIFIDIA Spinabifidia comes from the word for “split spine” in Latin. It is one of the class of serious birth defects, called neural tube defects (NTDS) ,which involve damage to the bony spine and the nervous tissue of the spinal cord. Some vertebrae of the spines don’t close properly during development and the spinal cords nerves don’t develop normally. They are exposed and can be subjected to further damage. www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf
  • 3. Types Of Spinabifidia And Symptoms The two forms of Spinabifidia are: - Spinabifidia occult - Spinabifidia manifesta Spinabifidia occulta is the mildest form of Spinabifidia . Most children with this type of defect never have any health problems and the spinal cord is often unaffected. The spinal cord does not protrude through the skin, although a patch of hair, a birthmark or a dimple may be present on the skin over the lower spine. www.kidshealth.org/parent/system/ill/spina_bifid.html
  • 4. Spinabifidia manifesta-1 Meningocele Meningocele involves the meninges, the membranes responsible for covering and protecting the brain and spinal cord. If the meninges push through the hole in the vertabrae, the sac is called a meningocele. The sac is often covered by a thin layer of the skin. and can be small as a grape or as large as a grapefruit Myelemeningocele is the most severe form of Spinabifidia. It occurs when the menings push through the hole in the back which results in the spinal cord pushing through Babies with myelemeningocele have a sac like mass that bulges from the back, but a layer of skin may not always cover it. In some cases the nerves and the spinal cord can be exposed. www.kidshealth.org/parent/system/ill/spina_bifid.html
  • 5. Spinabifidia And The Effects Due to the abnormal development of and damage to the spinal cord, a child with myelominingocele typically has some paralysis. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening is the more severe the paralysis tends to be. Loss of skin sensation below the level of the defect: there is loss of awareness of touch , pain, pressure and heat or cold in those areas of the skin normally innervated by nerves which are involved in the spinal cord defect . Muscle weakness below the level of the defect: The extent of the muscle weakness is related to the level of the spinal cord defect. Because the defect rarely reaches the level of the upper back, the muscle weakness is nearly always confined to the lower and lower trunk . www.kidshealth.org/parent/system/ill/spina_bifid.html
  • 6. Spinabifidia And The Effects Weakness of the muscle in the wall of the Bladder and Bowel: The bladder and bowel problems usually result in urinary and bowel incontinence. These difficulties arise from -weakness of the muscles in the walls of these organs, which normally contract to expel their contents. - Weakness, tightness, or failure of the of relaxation of the circular muscles. Associated Defect of Hydrocephalus: Close to 70% of the infants with Spinabifidia develop a defect known as hydrocephalus. This may cause a rapid enlargement of the head resulting from the abnormal accumulation of fluid within the cavities. (Chester A.Swinyard, M.D.PhD Spinabifidia pg13)
  • 7. Why children suffer from Spinabifidia what the possible causes The causes of spin bifida are largely unknown. Some evidence suggests that genes may play a role, but in most cases there is no familial connection . Spinabifidia occurs at the end of the first month of pregnancy when the two sides of the embroy’s spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the back. The condition usually is detected before a baby is born and treated right away. www.kidshealth.org/parent/system/ill/spina_bifid.html
  • 8. Spinabifidia and the Developmental Effects (Physical) The effects of Spinabifidia on development vary according to the type, location and severity of the condition. Generally defects which are higher on the spine produce a greater risk of paralysis and other complications. Problems associated with Spinabifidia on development of a child typically include: www.kidshealth.org/parent/system/ill/spina_bifid.html Physical: Toileting: All children vary in the rate at which they accomplish toileting skills. Children without Spinabifidia can generally manage their own toileting between the ages of two and five. For children with spinafidia there are factors that influence their learning. Impairment of the nerve supply to and from the excretory systems result in the workings of bowel and bladder, weak or paralysed leg and hip muscles make it hard to move to and from the toilet as well as getting dressed and undressed, wearing items such as calipers can make toileting difficult for children with Spinabifidia. Assisting a child with Spinabifidia in toilet training by providing stepping seats which include handles to assist with getting on and off the toilet and provide support during toileting. Gwynnyth Llewellyn and Lorraine Green-Living with Spinabifidia pg 70-71
  • 9. Spinabifidia and the Developmental Effects (Physical) - Eating : : It cannot be emphasised enough that children with spinabifidia should be treated just like other children. This can be done by ensuring that tasks are not being symplified unnecessarily, assistance is given only when needed Behavioral standards are not lowered unnecessarily Weak or paralysed leg and hip muscles make it hard to move in and out of a bath .. Loss of sensation means the child cannot feel the water temperature and may be unaware of where the legs and body are in space. For the child with poor sitting and balance, one or both hands may be needed for propping or support and this can interfere with using utensils and equipment. Some children with spinabifidia have poor hand function resulting in a weaker grip or decreased finger dexterity which can make mealtime and personal care tasks harder. Gwynnyth Llewellyn and Lorraine Green-Living with Spinabifidia pg 53
  • 10. Spinabifidia and the Developmental Effects (Social) Social: In many cases, infants and children with Spinabifidia require early and frequent hospital visits. This can interrupt normal social development. The challenge is to balance medical needs with the need to let a child develop into a confident, self sufficient and independent adult. The child may not be able to learn new skills due to limited movement or may not want to assist, or try to learn, when there are others to perform the tasks. Children with disabilities are often ‘babied’ by many even their peers. This suggests to the child and others that they are not capable of doing the tasks, and consequently are not given the chance to try. Because of physical and social factors children with Spinabifidia are more likely to have problems with learning new tasks than other children.. It is said that children with Spinabifidia are passive and lack the motivation to be independent. A child with Spinabifidia may need extra encouragement to help overcome the limitations of decreased strength, poor sensation and difficulties with movement and balance . Gwynnyth Llewellyn and Lorraine Green-Living with Spinabifidia pg 8
  • 11. Spinabifidia and the Developmental Effects (Emotional) Children with special needs of any type often rebel against their disabilities when they realise it cannot be wished away. They become depressed, deficant or withdrawn. Early attention to these issues through peer support groups/or counciling is often critical to healthy emotional development. www.spinabifidiamoms.com/english/about.html
  • 12. Spinabifidia and the Developmental Effects (Language) In some cases, children with Spinabifidia experience learning problems. They have difficulty with paying attention, expressing or understanding language, and grasping reading and math. Early intervention with children who experience learning problems can help considerably to prepare them for school. www.kidshealth.org/parent/system/ill/spina_bifid.html
  • 13. Treatment for Spinabifidia In some cases of Spinabifidia manifesta, treatment depends on the type of spina bifida and its severity. -Babies with meningocele usually have an operation during infancy in which doctors push the meninges back and close the hole in the vertabrae. Many will have no other health problems later unless there is nerve tissue involved with the sac. --Babies with myelomeningocele need more immediate attention and often have surgery within the first 1 to 2 days after birth. Doctors push the spine back into the vertabrae and close the h le to prevent infection and protect the spine Some children need subsequent surgeries to manage problems with their feet, hips and spine . www.kidshealth.org/parent/system/ill/spina_bifid.html
  • 14. Caring for Children with Spinabifidia Parents of children with spina bifidia receive support from a medical team that may include several doctors such as: Neurosurgeons Urologists Orthopedic surgeons Rehabilitation specialists General pediatricians Nurse practioner Physical and occupational therapists Social worker http://kidshealth.org/parent/system/ill/spina_bifida.html
  • 15. Successful Inclusion for Children with Spinabifidia Teaching a student with Spinabifidia requires all the normal teaching skills. Teachers must possess good communication skills and a willingness to work as team with parents, therapists and students. www.asbha.org.au/educatingthechildwithspinabifidia.html Some children need special requirements such as special braces e.g. ankle foot orthosis, crutches or wheelchairs. To help support the child services can work effectively with parents and families to make special modifications to best support the child. As well as having stairs provide a walk way for children that require a wheelchair, -Provide special care workers within services to support the children and assist them with certain tasks which children require help with. Research and find social networks to support the illness such as having connections with neurosurgeons, ,Urologists, Orthopedic surgeons, Rehabilitation specialists, General pediatricians, Nurse practioner, physical and occupational therapists, social worker
  • 16. Successful Inclusion for Children with Spinabifidia Provide a variety of information booklets, articles, books support networks for children with Spinabifidia for parents. Build effective communication with families to find out more information about the illness and the child to best support and make the child feel comfortable and secure. Researching different learning strategies to support the child’s cognitive and language skills as well as providing special care and assistance in tasks.
  • 17. Bibliography Gwynnyth Llewellyn and Lorraine Green. 1987 Living with Spinabifidia Chester A. Swinyard, M.D., Ph. D.1980. The Child with Spinabifidia www.asbha.org.au/educatingthechildwithspinabifidia.html www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf www.kidshealth.org/parent/system/ill/spina_bifid.html www.spinabifidiamoms.com/english/about.html
  • 18. References Gwynnyth Llewellyn and Lorraine Green. 1987 Living with Spinabifidia (pg 53) Chester A. Swinyard, M.D., Ph. D.1980. The Child with Spinabifidia (pg 13) < www.asbha.org.au/educatingthechildwithspinabifidia.html > < www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf > < www.kidshealth.org/parent/system/ill/spina_bifid.html > < www.spinabifidiamoms.com/english/about.html >