I was born a healthy baby girl on October 10, 1990. Weighing in at 6lbs 6oz, I became the new addition to a loving family. My mother did not hesitate when it came time to name me, for I was to be named after her only sister, my aunt Maribel. Unlike me, my aunt was not as fortunate as I and acquired cerebral palsy after birth. Cerebral palsy has affected my aunt's life in numerous ways, many of which we take for granted every day.
According to Helen D. Fong, in her book titled Focus on Cerebral Palsy Research, cerebral palsy is a "group of chronic disorders impairing control of movement that appear in the first few years of life and generally do not worsen over time. The disorders are caused by faulty development of or damage to motor areas in the brain that disrupts the brain's ability to control movement and posture. Symptoms of cerebral palsy include difficulty with fine motor tasks, difficulty maintaining balance or walking, involuntary movements. The symptoms differ from person to person and may change over time. Some people with cerebral palsy are also affected by other medical disorders, including seizures or mental impairment, but cerebral palsy does not always cause profound handicap. Early signs of cerebral palsy usually appear before 3 years of age. Cerebral palsy may be congenital or acquired after birth" (Fong, 2005, p.Vii).
My aunt was born on August 17, 1976, following my uncle Max and mother Reyna. During her delivery she was pulled out with forceps which had caused damage to her brain. At the time of her birth the doctor nor my grandparents knew that there had been any damage done to her brain and sent her home shortly after. It was not until my aunt Maribel acquired a fever a few weeks after she was born along with problems feeding and a bruise on her head that my grandmother had suspected something was terribly wrong. Following her instincts, my grandmother took my aunt to the emergency room. After my aunt's visit to the emergency room, she was diagnosed with seizures. My aunt was then sent to Children's Memorial to undergo more tests and research where she would then finally be diagnosed with Cerebral Palsy. According to Merlin J. Mecham, in his book
Cerebral Palsy discussing cerebral palsy and its etiology, "approximately 40% of cerebral palsy cases are from unknown causes, and in a small percentage of cases, a family history of the condition can be found, suggesting the possibility of inheritable genetic deviation. However, the most common cause of cerebral palsy is an induced defect of the brain" like the one my aunt had come to acquire (Mecham, 2002, p. 2).
Maribel had been diagnosed with cerebral palsy shortly after her birth in result of her injury during delivery. The risk of a child developing cerebral palsy increases if the baby is premature, but can happen anytime during the first 2 years of life, while the baby's brain is still developing (Hoch, 2009). "Perinatal brain injury remains a major problem in neonatal medicine and neurology, especially in prematurely born infants. Various sequelae could result from such injury to the developing brain, and a cluster of non-progressive, but changing neurologic disorders, clinically referred to as cerebral palsy (CP), could issue from this brain damage" (Fong, 2005, p. 1). "Getting the proper prenatal care may reduce the risk of some rare causes of cerebral palsy. However, dramatic improvements in care over the last 15 years have not reduced the rate of cerebral palsy. In most cases, the injury causing the disorder may not be preventable" (Hoch, 2009).
Due to my aunt's cerebral palsy and epileptic seizures, resulting from the damage done to her brain during birth, there were many changes and adjustments that had to be made to meet my aunt's needs. Because of her cerebral palsy and injury to her brain, my aunt's brain was never fully able to develop maturely. "Infants with cerebral palsy are frequently slow to reach developmental milestones such as learning to roll over, sit, crawl, smile, or walk" (Fong, 2005, p.1). My aunt, who is now 35, has the mental capability and development of a six month old baby and never met some of the developmental milestones such as walking, being handicap and having to use a wheelchair, and not being able to talk, making only "baby" noises. My aunt is not able to tend or take care of herself properly and therefore has to be taken cared for.
Gratefully, everyone in my family has played a major role in tending and caring for my aunt Maribel, and throughout the years we have come to accept all the responsibilities that care-taking to my aunt entails making it a 24/hour job. Now that my aunt is 35, we have been able to acquire a routine that we follow every day beginning from the moment she wakes up continuing to the time she is put in bed. From the morning my aunt wakes up she is given a specially made breakfast that is often times grounded up and softened due to her inability to properly chew and swallow her food. Preparing soft and "mashed" up foods prevents the chances of her choking and allows the food to be swallowed smoothly without complications. After her breakfast my aunt is either given a thorough sponge bath or carried into the tub for a bath. After her bath she then has her teeth brushed, hair combed, and is changed into her diaper and comfortable clothes. Once all that is taken care of she is carefully placed, usually by two people, into her wheel chair and taken downstairs with the aid of a elevator machine. Once she is downstairs the T.V will be turned on for her, she will be placed by the window to sight see, or depending on the weather will be taken for a stroll outside. She will then frequently be given water to drink along with diaper changes and checks throughout the day. Around lunch and dinner time she will then be fed again following a small snack in between and her medication to control her seizures.
Once seven or eight o'clock comes around she is then taken in the elevator lift to be placed in bed. Her diaper will then be changed if it had not been done so previously and will be carried into her bed. She will then be given her medication one last time along with a little bedtime snack and milk. Although she is in bed it is still crucial to keep a frequent eye on her in case she seizures during the night, which then will result in whoever is there to care to her to administer the proper technique of placing her on her side so she does not bite her tongue helping the seizure pass.
"Drugs have been useful for people with CP to help control seizures. About 33% of persons with cerebral palsy have convulsive seizures of various degrees" (Mecham, 2002, p. 13). My aunt is given three types of medications to control her epileptic seizures every day, three times a day with a meal. As for treatment regarding cerebral palsy, "there is no standard therapy that works for all patients" (Fong, 2005, p. Vii). My aunt has been given therapy sessions and uses a wheelchair and elevator lift to be transported to different areas of the house. It is my families job to provide her with everything she needs for she is unable to communicate with us her wants or needs. "Cerebral palsy is a lifelong disorder. Long-term care may be required. The disorder does not affect expected length of life. The amount of disability varies" (Hoch, 2009).
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| Here we have Maribel's toothbrush, mouthwash (a small amount of mouthwash is placed inside the little dish to soak the toothbrush in and to place under her chin in case there is a mess) along with her toothpaste. This is prepared every morning and night after her last meal. | |
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| Because Maribel is unable to walk and go to the bathroom, she has to be placed in a diaper and changed just as you would a little baby. She uses a diaper, baby powder, baby wipes/towelettes, and some diaper cream to prevent irritation and rashes. |
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| These are the materials used when we give Maribel a sponge bath. She has a washing cloth, little tub filled with warm water and soap, baby oil, body wash, deodorant, and body lotion. |
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| As my mother gets ready to properly place her onto the chair to bring her downstairs, she carefully pushes her forward so that she can comfortably sit behind her. |
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| She then wraps her arms around her lower chest and under her armpits so that she has a good grip when it is time to carry her and place her on the wheelchair. |
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| After my mother is in position she then acquires assistance (usually one of my sisters or myself) and asks them to wrap their arms around the lower part of her body (legs) so that they can place her on the wheelchair together carefully. |
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| On the count of three both my mother and sister lift her and carefully place her on the wheelchair. |
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| Once my aunt Maribel is placed on the wheelchair my mother then buckles her up and adjusts pillows so she can be comfortable. |
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| After my aunt Maribel is properly placed in her chair, she is then placed in the elevator/lift and brought downstairs. |
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| Once my aunt is brought downstairs, the T.V is turned on, or she is placed by a window so she can sit and relax. |
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| Meal time! This is one of the many meals that is specially prepared for my aunt. Although it looks really unappetizing it is something frequently prepared and consumed by others, just in a different way. This is one of my aunts favorites! It is Mexican rice and BBQ chicken. The only difference is that the BBQ chicken has to be shredded and mushed up a bit with a fork so it is much easier to swallow. My grandmother then adds a little more barbeque to aid in softening up the rice. |
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| Since my aunt is unable to feed herself my grandmother or a family member has to properly feed her for every bite. |
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| Placing our hand on my aunts chin signals my aunt to open her mouth and aids in properly feeding her the spoonful of food. This is most often called the head tilt, chin lift technique. |
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| Around 7pm or 8pm, my aunt is then placed back on the lift so that she can be placed into bed using the same techniques as seen above. |
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| after my aunt is placed in her bed the wheelchair is then placed back inside the elevator/lift until the next morning when it will need to be used again. |
Taking care of my aunt involves a lot of hard work and requires responsibility, patience, and dedication. My aunt is not able to do even the smallest task to tend and take care of herself unlike those of us who are more fortunate. She has to be tended and cared for all 24 hours of the day and have to deeply take into consideration her needs for she is unable to properly communicate with us. She is unable to walk and therefore needs to be carried and provided with the proper transportation devices to get around. My aunt developed cerebral palsy from damage done to her brain during delivery from being pulled by forceps. Any person, especially babies withing their first 2 years are vulnerable to developing cerebral palsy due to brain damage. Although there is no cure for cerebral palsy, we can take some precaution, and be aware of what cerebral palsy is, what it consists of, and being knowledgeable of how it is commonly acquired. Although it saddens me to see a family member physically and mentally disabled because of cerebral palsy, my aunt has taught me to never take anything for granted. Tending and caring to her needs has not only allowed me to help her in all that she is unable to do, but has made me aware of this health issue that many people seem to be in the dark about.
My aunt is fortunate enough to have the appropriate help and devices needed to tend to her in the comfort of her own home. However, there are many schools and services that provide the appropriate help and aid to tend to those with cerebral palsy so they can provide them with therapy and in some instances teach them ways to become more independent. Being aware of this health issue is the first step, but why stop there? We can take this further by volunteering and helping those who are disabled and affected with cerebral palsy by volunteering in special recreation programs, and services for people with disabilities. Most people affected with cerebral palsy are unable to tend to themselves, as I have come to show you in regards to my aunt, Maribel. For those of us who are fortunate enough to mentally develop properly, take care of ourselves, and become independent, why not share our abilities and help a person who is unable to help themselves? Will you take that challenge?
Works Cited
Fong, D. H., (2005). Focus on cerebral palsy research. NY: Nova Science Publishers, Inc.
Hoch, B. D. (2009, September 16). Cerebral palsy. Retrieved from
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001734/
Meacham, J. M., (2002). Cerebral palsy. Austin, TX: PRO-ED, Inc.
