Spina Bifida Thesis

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Spina Bifida

Living with a sibling who is physically challenged: Spina Bifida

Living with a sibling who has a severe form of Spina Bifida is an experience that is at times difficult and heartrending. The condition varies in terms of the distress and the symptoms that the sufferers undergo. There are many difficulties that have to be overcome for these individuals and aspect such as overweight and allergies are some of the least of these problems. However, what is possibility the most difficult and complex aspect that has to be dealt with is that, although there are many physical aspects to contend with, the mental and psychological aspects can be just as severe. As will be discussed in this paper, aspects such as depression can also play a part in the living conditions and a wider array of issues and difficulties in day-to-day living are symptomatic of this severe physical defect.

Living with a sibling with Spina Bifida presents extremely upsetting and difficult aspects to deal with in regard to the physical and emotional aspects of this condition. However, on the other hand the courage and the endurance they can be observed in people with this condition is a positive aspect that will also be discussed in this paper.

2. Brief overview

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In order to describe living with someone with this condition it is firstly important to provide a brief overview of what Spina Bifida is and in what ways it impacts the individual who suffers from this condition. Spina Bifida is a Latin term that means to "split" or open the spine. Essentially this condition refers to a birth defect which involves the incomplete development of the spinal cord or its coverings.

It is also described as "...a birth condition characterized by an incomplete closure of the spine." more formal definition of Spina Bifida is as follows;

Spina bifida occurs at the end of the first month of pregnancy when the two sides of the embryo'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.

Thesis on Spina Bifida Assignment

The causes of Spina Bifida are not conclusively known. There is a general view that the most possible causative factor of this condition is genetic, however Spinal Bifida can occur without any familial connections.

The origins of this condition have also been related to various medications to control epileptic seizures.

The most common forms of Spina Bifida are known as Spina Bifida Occulta and Spina Bifida Manifesta. These can be further categorized into three major categories. Spina Bifida Occulta is when the condition is hidden and has the fewest negative symptoms and complications. This is one of the most common occurrences of this condition, although the actual prevalence rate is not known.

In the category known as Meningocele,

The membrane that surrounds the spinal cord may enlarge, creating a lump or "cyst." This is often invisible through the skin and causes no problems. If the spinal canal is cleft, or "bifid," the cyst may expand and come to the surface."

The third category is referred to as Spina Bifida Cystica. This is a complex and extreme form of the condition and very often includes serious neurological problems. This condition"... accounts for 94% of cases of true spina bifida."

Spina Bifida is not a rare condition and is estimated to occur in two of every 1,000 children.

However, medical advances in recent years have improved the chances of those suffering from this condition and made it possible for them to live fruitful and productive lives. Nevertheless, the individual with more severe forms of Spina Bifada can suffer from a number of debilitating symptoms that affect the quality of life. These can include muscle paralysis, bladder and bowel problems and hydrocephalus. It should also be noted that at present there is no cure for this condition. The aim of the treatment is to "...allow the individual to achieve the highest possible level of function and independence."

3. Living with Spina Bifida

As can be deduced from the above overview, living with a family member who has Spina Bifida can mean dealing with a wide array of problems. One of the most problematic aspects of living with a sibling with this condition is that it has a profound effect on the family and home situation. This can mean that the family has to adjust and sacrifice in order to accommodate the needs and problems that surround the family member with Spina Bifida. In some cases parents may feel that they are partially responsible for this condition; this can have a negative effect on the family as a whole. However, this is a false view and there is no person to blame for this condition.

Living with a sibling who has Spina Bifida means that one has to be aware of the limitations that it imposes on the individual. One has to be extremely sensitive to the fact that there are both physical and mental or psychological aspects that are associated with the symptoms of the condition.

Living with a person who suffers from this condition also means that one should be cognizant of the fact that there is no single or definitive condition known as Spina Bifida. In reality this terms refers to "...a multitude of problems that affect the mind, the body, and the spirit. No two cases of Spina Bifida are ever the same."

This is an extremely important observation that I found to be relevant to my situation.

My sister has a relatively severe form of this condition, referred to in the previous section. This condition was to result in a number of interrelated symptoms. She was diagnosed at an early age with lumbar-level Spina Bifida with shunted hydrocephalus. Hydrocephalus has been described as follows:

Hydrocephalus occurs when there is a build-up of cerebrospinal fluid (CSF) within the head usually because of inadequate absorption of the CSF. Hydrocephalus can be likened to a bathroom tub with the faucet always on and a partially clogged drain.

A build up of cerebrospinal fluid creates a number of problems as there can be blockages to the flow of the fluid. This can result in an increase in pressure in the head. This was found to be the case when my sibling complained of headaches and subsequent bouts of dizziness. In this situation the usual form of treatment is the insertion of a tube known as a shunt, which is intended to "...divert the excess CSF to another site where it can then be reabsorbed back into the blood stream."

My sister therefore requires the use of the shunt for her entire life. This is a particularly worrying part of her condition. If the shunts are not monitored regularly they can lead to severely negative outcomes. As one expert states, "Without treatment, this extra fluid can cause neurological problems or mental retardation; however, these individuals are of normal intelligence if their hydrocephalus is treated aggressively."

The problem is that the shunt can lead to a number of debilitating problems. These are caused when the shunt breaks or malfunctions in various ways. They often need to be changed. In the case of a malfunction to the shunt, there are various symptoms that I and my family have to continually be aware of. These include headaches as well as nausea. These symptoms may be linked to other factors and issues, such as a decrease in intellectual and academic performance.

We also suspect a shunt malfunction when certain physical signs become evident. In my sisters case this manifests itself in loss of balance and coordination. This is also linked to other debilitating symptoms, such as poor bowel functions and difficulty in swallowing.

Therefore, in living with a sibling who has this condition one has to be continually aware of these symptoms and signs that indicate various malfunction. This in turn necessitates that I am my family have to be continually alert and aware of any of these signs.

However, probably the most difficult aspect of this condition to deal with is the inevitable bouts of depression. These can be linked to the physical aspects of the condition and the possibly of neurological damage. In the case of my sibling, depression is largely the result of the frustration at the inability to experience and enjoy life like everyone else. I am acutely aware of the suffering that my sibling has to ensure and make every effort to cheer her up and reduce any negative effects and symptoms.

In addition to the above there are a number of other aspects that need to be taken into account in dealing with this condition and which manifest themselves in my particular case. One of the effects of this condition that is most difficult to regulate is obesity. In this particular case my sister spends most of her time in a wheelchair and this has… [END OF PREVIEW] . . . READ MORE

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