Spina Bifida Paper, please mark up if you have time :D
Please mark it up :D Thanks so much! <3
~Gina
Spina Bifida is a congenital disease that affects about one out of every thousand children born (NICHCY, 2004). “Spina bifida begins in the womb, when the tissues that fold to form the neural tube do not close or do not stay closed completely. This causes an opening in the vertebrae, which surround and protect the spinal cord. This occurs just a few weeks (21 to 28 days) after conception-usually before the woman knows that she is pregnant” (Spina Bifida Overview, 2005). The exact reasons for this condition are not yet known for sure, but it is suspected that genetics and lack of folic acid have some role to play in it (Spina Bifida Overview, 2005). Some scientists believe that women with diabetes or a disorder having to do with seizures are far more likely to give birth to a child with Spina Bifida (Medical, 2001). It is most common in people of Hispanic and Caucasians of European descent, while it is fairly uncommon in those of the Asian, African, and Jewish ethnicity (Medical, 2001). There are two major types of Spina Bifida; Spina Bifida Cystica and Spina Bifida Ocultica. Of the two the more severe is Spina Bifida Ocultica. In this version, there is no distention of the meninges, but the vertebral arch is not fused at all or in some cases completely. In this case the spinal cord itself and its membranes are typically almost completely intact. There may be a slight indent or swelling around the affected area, discoloration, or small patches of hair, but otherwise there tends to be no obvious signs of a problem. “L5 and S1 are the most common vertebrae involved” (article SBO). “Spina Bifida Cystica, this being subdivided into two main conditions, (i) meningocele and (ii) myelomeningocele” (Anderson & Spain, 1977). In the case of meningocele cerebral spinal fluid and parts of the meninges creates and fills a cyst like sac over the infant’s spine. This is the least problematic form of Spina Bifida and often times the child with it has no permanent disabilities; unfortunately it is also the least common form (Spina Bifida Overview, 2005). Only about four percent of children diagnosed with Spina Bifida have meningocele (NICHCY, 2004). In the case of Myelomeningocele, however, parts of the actual spinal cord are also in the sac, because of this, it is the most severe and common form of Spina Bifida affecting about 94% of people with Spina Bifida (Spina Bifida Overview, 2005). In both cases of Spina Bifida Cystica, the cyst is normally covered with skin. If the spinal cord is outside of the spinal column, the rest of the spinal column is usually affected also (Anderson & Spain, 1977). It is usually complicated by hydrocephalus, in fact it is present in between eighty and ninety percent of children diagnosed with Spina Bifida at birth (Neurosurgery, 2005).
Some of the physiological complications of a teenager with Spina Bifida in general are incontinence of bladder, bowels, or both. The reason for this is that the most common places affected in this defect are the fifth lumbar and the first sacral vertebral disks. Since the lumbar vertebrae contain the nerves that control the hips, legs, and bladder; while the sacral vertebrae contain the nerves that control the sphincter muscles around the urethra opening, the rectal opening, and the feet (Nu 190 book). They also suffer from the lack of control over lower extremities, likewise controlled by these vertebrae. Sometimes the patient is able to walk with the aid of braces or crutches (Neurosurgery, 2005), but most often the patient is confined to a wheelchair which in and of it self brings problems. With the aid of crutches the patient is at risk for falling, the weakness and lack of control almost guarantees this, but with a lot of strength exercise and fall precautions, their life is slightly more normal. The fact that their spine is not formed correctly in the first place is bad, but as the child grows into adulthood, they often develop scoliosis as the spine stretches (Symptoms, 2005). Often times the infant will develop hydrocephalus, in order to prevent mental retardation, blindness, and/or seizures doctors will put a shunt into their cranial space to prevent a build up of pressure (NICHCY, 2004). This brings on problems such as infection, a risk for stroke upon repeated operations (Symptoms, 2005), and the risk for blocked shunts, since they are bound to become blocked every once in a while. Many times however, the patient suffers from mild metal retardation due to the fact that the shunt becomes blocked or the shunt is not put in fast enough. On top of all of these, due to their difficulty in moving around, many people with Spina Bifida are obese; which just bring even more complications into the mix. “Another entity which is common in children with spina bifida is known as Chiari Malformation…The type of symptoms that can occur with Chiari malformations include repeated aspirations, apnea, neck pains, and complaints of weakness or funny sensations in the arms” (Neurosurgery, 2005).
Some complications due to the patient’s role function and interdependence are that the patient will always be dependent for the most part on those around them. They may be able to take responsibility of most of their own care such as washing most of their body and cleaning their own hair, but due to the physical handicaps such as incontinence and their shunt they would still need a nurse to come in at least every other day to help them clean areas they cannot reach and to check to make sure that their shunt is not infected or blocked. It is either that or have someone live with them who has the knowledge and experience to do this for them. Often times they have the support of the community, especially if they live in a small town. Their roles in life can consist of being a student, son/daughter, wife/husband, and sibling. They can get married, but often they have sexual difficulties as well as continence issues. If they get a job it must be a very flexible one due to the need for many treatments. Let us say for example a person with Spina Bifida is working in a high demand job, the first time that they have to take time off to get their shunt replaced they would likely get fired. Very few large companies of today are willing to put the good of their workers in front of making money, thus it tends to be more difficult for people who suffer from Spina Bifida to gain a high demand job. However, the problem of incontinence does not tend to be as much of a problem as one may think as many people with Spina Bifida learn at a very early age how to catheterize them self, thus making continence possible in social situations (NICHCY, 2004).
Complications due to the patient’s self-concept would be that the patient would be belief that they do not fit in with their peers due to their either being in a wheel chair or always having to wear braces. They might suffer from the stigmatism that not only do they have braces and/or a wheel chair, but also they often times is obese due to their lack of exercise/physical activity (Symptoms, 2005). For a child even the smallest of differences can be detrimental to their self-esteem. One girl whom I interviewed commented on the fact that often people do not ask why she is in a wheel chair for fear of insulting her, so instead they tend to just stare. She informed me that she would much rather be asked what is wrong with her then to be stared at and have them wondering, or even worse trying to guess why she is confined to a wheel chair (Brianna, 11-29-05). Not only do these children often look different, they often “have difficulty with paying attention, expressing or understanding language, and grasping reading and math (NICHCY, 2004).
In doing a functional assessment on a 21 year old young woman who has lived with Spina Bifida, it is found that many of the ADL’s she is able to do independently. In the list of ADL’s she is able to: brush her teeth, shop, cook, shave, eat, use the phone, pay bills, manage medications, and often get out of bed and into her chair independently. She is also able to get into and out of cars for the most part solo, although she does require someone else to drive and move her chair for her. She has a nurse come in about every two days to help her with bowel movements, nail/foot care, and occasionally bathing. She lives with her brother so that he can help her with home maintenance and housekeeping, basically just so that there is always someone there to keep an eye on her just in case. Otherwise she is incredibly independent. She is confined to a wheelchair for the most part due to unsteady-ness/ occational weakness, but has almost full ROM. When she stands upright, she is about four foot eight, and has had a metal rod in her back since the age of 15 to keep her spine straight. Some of the difficulties she might have as far as sleep are that she probably has to wear a depends to bed due to her incontinence, this might make it more difficult for her to fall to sleep sometimes, due to this she may not feel rested upon waking. Because of her paralysis from the waist down her lower extremities might cramp up during the night making it difficult for her to fall asleep. She occasionally drinks alcohol, but not that often, mostly when she is around her friends as it is a social thing for her. On those occasions she might have three to six drinks. She does not usually have a problem staying awake during the day, and will take a nap maybe once a month. Functionally, she is fairly independent, she needs a little bit of help with some things, but for the most part can function almost completely independently.
~Gina
Spina Bifida is a congenital disease that affects about one out of every thousand children born (NICHCY, 2004). “Spina bifida begins in the womb, when the tissues that fold to form the neural tube do not close or do not stay closed completely. This causes an opening in the vertebrae, which surround and protect the spinal cord. This occurs just a few weeks (21 to 28 days) after conception-usually before the woman knows that she is pregnant” (Spina Bifida Overview, 2005). The exact reasons for this condition are not yet known for sure, but it is suspected that genetics and lack of folic acid have some role to play in it (Spina Bifida Overview, 2005). Some scientists believe that women with diabetes or a disorder having to do with seizures are far more likely to give birth to a child with Spina Bifida (Medical, 2001). It is most common in people of Hispanic and Caucasians of European descent, while it is fairly uncommon in those of the Asian, African, and Jewish ethnicity (Medical, 2001). There are two major types of Spina Bifida; Spina Bifida Cystica and Spina Bifida Ocultica. Of the two the more severe is Spina Bifida Ocultica. In this version, there is no distention of the meninges, but the vertebral arch is not fused at all or in some cases completely. In this case the spinal cord itself and its membranes are typically almost completely intact. There may be a slight indent or swelling around the affected area, discoloration, or small patches of hair, but otherwise there tends to be no obvious signs of a problem. “L5 and S1 are the most common vertebrae involved” (article SBO). “Spina Bifida Cystica, this being subdivided into two main conditions, (i) meningocele and (ii) myelomeningocele” (Anderson & Spain, 1977). In the case of meningocele cerebral spinal fluid and parts of the meninges creates and fills a cyst like sac over the infant’s spine. This is the least problematic form of Spina Bifida and often times the child with it has no permanent disabilities; unfortunately it is also the least common form (Spina Bifida Overview, 2005). Only about four percent of children diagnosed with Spina Bifida have meningocele (NICHCY, 2004). In the case of Myelomeningocele, however, parts of the actual spinal cord are also in the sac, because of this, it is the most severe and common form of Spina Bifida affecting about 94% of people with Spina Bifida (Spina Bifida Overview, 2005). In both cases of Spina Bifida Cystica, the cyst is normally covered with skin. If the spinal cord is outside of the spinal column, the rest of the spinal column is usually affected also (Anderson & Spain, 1977). It is usually complicated by hydrocephalus, in fact it is present in between eighty and ninety percent of children diagnosed with Spina Bifida at birth (Neurosurgery, 2005).
Some of the physiological complications of a teenager with Spina Bifida in general are incontinence of bladder, bowels, or both. The reason for this is that the most common places affected in this defect are the fifth lumbar and the first sacral vertebral disks. Since the lumbar vertebrae contain the nerves that control the hips, legs, and bladder; while the sacral vertebrae contain the nerves that control the sphincter muscles around the urethra opening, the rectal opening, and the feet (Nu 190 book). They also suffer from the lack of control over lower extremities, likewise controlled by these vertebrae. Sometimes the patient is able to walk with the aid of braces or crutches (Neurosurgery, 2005), but most often the patient is confined to a wheelchair which in and of it self brings problems. With the aid of crutches the patient is at risk for falling, the weakness and lack of control almost guarantees this, but with a lot of strength exercise and fall precautions, their life is slightly more normal. The fact that their spine is not formed correctly in the first place is bad, but as the child grows into adulthood, they often develop scoliosis as the spine stretches (Symptoms, 2005). Often times the infant will develop hydrocephalus, in order to prevent mental retardation, blindness, and/or seizures doctors will put a shunt into their cranial space to prevent a build up of pressure (NICHCY, 2004). This brings on problems such as infection, a risk for stroke upon repeated operations (Symptoms, 2005), and the risk for blocked shunts, since they are bound to become blocked every once in a while. Many times however, the patient suffers from mild metal retardation due to the fact that the shunt becomes blocked or the shunt is not put in fast enough. On top of all of these, due to their difficulty in moving around, many people with Spina Bifida are obese; which just bring even more complications into the mix. “Another entity which is common in children with spina bifida is known as Chiari Malformation…The type of symptoms that can occur with Chiari malformations include repeated aspirations, apnea, neck pains, and complaints of weakness or funny sensations in the arms” (Neurosurgery, 2005).
Some complications due to the patient’s role function and interdependence are that the patient will always be dependent for the most part on those around them. They may be able to take responsibility of most of their own care such as washing most of their body and cleaning their own hair, but due to the physical handicaps such as incontinence and their shunt they would still need a nurse to come in at least every other day to help them clean areas they cannot reach and to check to make sure that their shunt is not infected or blocked. It is either that or have someone live with them who has the knowledge and experience to do this for them. Often times they have the support of the community, especially if they live in a small town. Their roles in life can consist of being a student, son/daughter, wife/husband, and sibling. They can get married, but often they have sexual difficulties as well as continence issues. If they get a job it must be a very flexible one due to the need for many treatments. Let us say for example a person with Spina Bifida is working in a high demand job, the first time that they have to take time off to get their shunt replaced they would likely get fired. Very few large companies of today are willing to put the good of their workers in front of making money, thus it tends to be more difficult for people who suffer from Spina Bifida to gain a high demand job. However, the problem of incontinence does not tend to be as much of a problem as one may think as many people with Spina Bifida learn at a very early age how to catheterize them self, thus making continence possible in social situations (NICHCY, 2004).
Complications due to the patient’s self-concept would be that the patient would be belief that they do not fit in with their peers due to their either being in a wheel chair or always having to wear braces. They might suffer from the stigmatism that not only do they have braces and/or a wheel chair, but also they often times is obese due to their lack of exercise/physical activity (Symptoms, 2005). For a child even the smallest of differences can be detrimental to their self-esteem. One girl whom I interviewed commented on the fact that often people do not ask why she is in a wheel chair for fear of insulting her, so instead they tend to just stare. She informed me that she would much rather be asked what is wrong with her then to be stared at and have them wondering, or even worse trying to guess why she is confined to a wheel chair (Brianna, 11-29-05). Not only do these children often look different, they often “have difficulty with paying attention, expressing or understanding language, and grasping reading and math (NICHCY, 2004).
In doing a functional assessment on a 21 year old young woman who has lived with Spina Bifida, it is found that many of the ADL’s she is able to do independently. In the list of ADL’s she is able to: brush her teeth, shop, cook, shave, eat, use the phone, pay bills, manage medications, and often get out of bed and into her chair independently. She is also able to get into and out of cars for the most part solo, although she does require someone else to drive and move her chair for her. She has a nurse come in about every two days to help her with bowel movements, nail/foot care, and occasionally bathing. She lives with her brother so that he can help her with home maintenance and housekeeping, basically just so that there is always someone there to keep an eye on her just in case. Otherwise she is incredibly independent. She is confined to a wheelchair for the most part due to unsteady-ness/ occational weakness, but has almost full ROM. When she stands upright, she is about four foot eight, and has had a metal rod in her back since the age of 15 to keep her spine straight. Some of the difficulties she might have as far as sleep are that she probably has to wear a depends to bed due to her incontinence, this might make it more difficult for her to fall to sleep sometimes, due to this she may not feel rested upon waking. Because of her paralysis from the waist down her lower extremities might cramp up during the night making it difficult for her to fall asleep. She occasionally drinks alcohol, but not that often, mostly when she is around her friends as it is a social thing for her. On those occasions she might have three to six drinks. She does not usually have a problem staying awake during the day, and will take a nap maybe once a month. Functionally, she is fairly independent, she needs a little bit of help with some things, but for the most part can function almost completely independently.