Tay-Sach’s Disease Essay Example for Free

Tay-Sach’s Disease Essay The purpose of this paper is to discuss the hereditary genetic disease Tay-Sach’s, discovered during a pregnancy. The discussion will focus on developing an interdisciplinary team and care plan for the expectant parents based on their wishes. This paper will also cover any ethical and/or legal dilemmas that may arise as well as identify counseling needs of those involved. In addition, there will be a personal reflection about high risk pregnancy, abortion, and the decision made by the expectant parents. This study involves a married couple who after two years of trying to conceive a child became pregnant. The expectant Mother Rita Trosack is 43 years old and her husband Peter is 46. They are both Caucasian and have mediocre knowledge of their family history. Due to advanced maternal age, chorionic villus sampling was performed and it was determined that the baby is affected with Tay-Sach’s disease. Criteria Interdisciplinary Team, Rationales and Expectations Due to positive finding of the fetus being afflicted with Tay-Sach’s disease, this pregnancy is now considered to be high risk. This will require a more specialized interdisciplinary team to follow her intensely throughout her pregnancy as well as the baby after he/she is born. First and foremost the patient(s) are always going to be a part of the interdisciplinary team. Making them a part of the team helps them to be more comfortable with the situation as a whole. It also makes them feel as though they have some sort of control throughout this ordeal. It will be the patient(s) responsibility to voice their concerns and wishes. The first healthcare member of the team is the RN. The RN will be the advocate for the family. It will be his/her responsibility to build a trusting relationship and rapport with the family in order to build their confidence and make sure that their wishes are being adhered to. In this particular case the RN will need to be able to recognize her own feelings in regards to the issues that surround Tay-Sach’s disease and know how to set them aside so that he/she can properly advocate. The RN will need to assess the situation, background, culture, and beliefs to get a good sense of who the family is. It will be the RNs duty to try and answer any questions the family may have and direct the family to the necessary resources that they may require. Another member of the team will be the perinatologist. This is a physician who specializes in high risk pregnancy and births. There will also be a neonatologist, this is the physician who specializes in newborns that are premature and/or have birth defects. This member of the team will be involved in the care of the fetus throughout the pregnancy as well as at the birth and will follow the baby until care is transferred over to a pediatrician. The pediatrician will provide the necessary care and treatment for the infant and into his/her childhood, basically throughout life. A genetics counselor will be brought in to speak with the family about Tay-Sach’s disease. The counselor will be able to assess the parent’s knowledge base of genetics, explain the disease and how it is caused, discuss any concerns they have, and explain the possible outcomes of future pregnancies. A social worker will also be involved to provide the family with any other resources they may need such as support groups, counseling and/or legal help (Ainsworth, 2011). Teaching Plan The RN would need to initially call the patient and set up an appointment for them to come in and speak with the physician. The physician would be the one that would explain to the family exactly what Tay-Sach’s is. The physician would explain to the expectant parents that Tay-Sach’s is an inherited disorder that is caused by a genetic mutation that both parents carry. What happens is the body is missing an important enzyme and without it, there is a buildup of a fatty substance within the cells of the nervous system, mainly the brain, ultimately resulting in permanent malfunction. Signs and symptoms of the disease do not begin to surface until the child is around six months of age and it begins with gradual dysfunction of the motor skills. As the nervous system further degrades the symptoms become worse and the child loses sight, hearing, and mental functionality. Unfortunately there is no treatment for Tay-Sach’s except comfort measures and the life expectancy for a child with infantile Tay-Sach’s disease is typically four to five years (Ainsworth, 2011). The physician would need to emphasize that maternal age or lifestyle does not have any part in the cause of this diagnosis. The physician would then need to explain the options available at this time which are carrying the child to term or terminating the pregnancy via therapeutic abortion (Tay-sachs. org). Depending on the parent’s decision, should they choose to carry the child, they can also choose to care for the infant or place it for adoption. After the physician has spoken with the family, the RN would need to be there for the family, not only to listen, but again to answer any questions they may have. Mr. and Mrs. Trosack have decided to carry their infant to full term and care for their child due to their religious beliefs. At this time the RN would be responsible to clarify and document the parents’ wishes. The RN would be responsible for coordinating appointments with the specialists that will be involved in the care and communicating this with the family. The RN will then give the family the educational information to the parents to take home with them and the web address to the online support group for Tay-Sach’s. While finding this type of information out is unsettling, it will be the RNs job to make sure and give the parents ways to cope. The RN can teach them about relaxation techniques such as guided imagery, music therapy, or breathing patterns that can be done in situations when they are feeling anxious about the impending birth. The RN will educate the parents on maintaining a healthy diet and continuing regular activity and exercise as the physician recommends. The RN will explain to the expectant parents that since the pregnancy is considered high risk based on maternal age and the diagnosis of Tay-Sach’s there will be more frequent visits to the perinatologist than one would typically expect and there may be more ultrasounds performed to assess the baby. With any pregnancy the RN would want to educate the parents about signs of labor and when to seek medical attention in case of an emergency. The parents would need to know things that are not normal during pregnancy such as burning upon urination, vaginal bleeding, fluid gushing from the vagina, severe swelling, vision changes, loss of consciousness, or a severe headache. Education about abstinence from smoking and consumption of alcohol is also a necessity, regardless. Another oint of discussion eventually will be the birth, the RN would need to let the parents know that with a high risk pregnancy, home births are not recommended (mayoclinic. com). Ethical Implications of Genetic Testing Some would argue the genetic testing, especially during pregnancy gives someone the right to play â€Å"God†. In an article written by Dr. Rob DeSalle he discusses how we are now able to detect certain genetic disorders that parents can pass to their children such as Tay-Sach’s or Phenylketonuria. According to his article he wonders if this will give people a free pass to design their babies. Dr. DeSalle also speaks about â€Å"superhumans† in his article and the fact that with advancing technology we could create a race without defects (amnh. ecolleg. com). Chorionic villus sampling is typically done at 10-12 weeks gestation. An ethical concern surrounding the timeframe of this testing is that it often causes the parents to make the decision of a therapeutic abortion in a pregnancy that may have spontaneously aborted on its own. Although this theory is not 100 percent, it still could prevent the family from going through such a disheartening experience (Himes, 1999). Another dilemma families are faced with is the risk versus benefit. Chorionic villus sampling does not come with our risks. This type of test involved inserting a catheter either through the abdomen or transvaginally into the placenta and collecting a sample. Doing so has been known to cause a spontaneous abortion or even cause reduced limbs. The test, while important, could potentially do more harm than good. Ethical and Legal Dilemmas Whose right is it to bring a dying child into the world? Some believe that everything happens for a reason and others believe doing so is a form of inhumanity. This could surely affect the parents decision, especially if they felt that carrying the child to term and bringing it into the world would cause it suffering. What if the test is wrong? It is known that chorionic villus sampling is not as effective of a test as an amniocentesis, therefore with this knowledge the parents may wish to wait until further testing can be done, however by that time, the choice of therapeutic abortion is no longer an option (Himes, 1999). As far as legalities are concerned, discrimination would possibly be an issue. The parents insurance may not want to provide the necessary coverage for their child because the diagnosis was made in utero and they could have â€Å"prevented† it. The child is also going to require around the clock care, will either of the parents be let go from their positions for needing to take so much time off of work? These are two issues that also may affect the parent’s decision. It was determined that they both work very extended hours and this child will definitely have an effect on that. Patient Advocacy Advocating for the Trosack’s means standing up for them so that their decision and wishes are adhered to and making sure they are heard by the interdisciplinary team. The RN would also be their voice of reason when trying to explain their decision to other family members that they may bring in to learn more about the situation. Regardless of the RNs personal feelings it is his/her duty to make the parents feel confident in their decision and know that they are making the right decision for themselves. Personal Reflection As far as my own personal opinion, I am completely against abortion unless it is medically necessary or a woman has been raped or molested and does not want the baby that was conceived as a result. I do believe that the parents have the right to do whatever they feel is best for their family. In the case of the Trosack’s, I fully support their decision to carry their child.

Making School Uniforms Mandatory :: essays research papers

Intro I am a student that has attended 3 schools and has always worn a school uniform, a mate has never experienced any issues with school uniforms, and have noticed a few issues that can be prevented from the use of a uniform. Uniforms, not only had they been proven to be helpful at school, but they are also helpful at home. Base Parents spend a couple hundred dollars per year on clothing just to make their children meet the latest fashion. An average shop favoured by many teenagers, such as International, sells a piece of clothing for around $40 each! Parents can really find this money useful while paying bills. Uniforms are cheap, after a mate when his primary, his parents had a lot of excess money to spend because of uniform! A typical gang trait is to have a gang name, gang color, and other characteristics, that make them diverse this makes parent spend money on clothes that children don?t need. There is a possibility of violence due to an article of clothing. If a student is dressed up similar to a member of a gang, another student who does not like that gang might plan to attack that person. In this case uniforms can protect the safety of another. Many people believe if you compare a uniform school with a non-uniform school, you?ll see that violence is much popular in the non-uniform school. As said above clothing can be quite expensive, how would one feel if their garment has been misplaced or stolen? A lot of students love to brag about their shoes, especially sport shoes, when they first buy it. Famous Sport shoes are worth $120 on average, and not everybody in the school is Happy. Envy takes place when a student replaces their new shoe, with an old one for a gym class. The other student returns to the changing room, and finds out that his new sport shoes have disappeared. The shoe that had cost a lot of money, and now it?s gone! This would have never happened if the sc hool the student goes to makes a uniform compulsory. Instead of bring a students fancy shoes that student would have brought his leather shoes, that matches the school uniform. Uniform decreases the amount of theft on school property. Uniforms make it harder for strangers to sneak in the school, because for sure they?ll be the center of everyone?

Compare aspects of the life of your mother at the age of 15 with the life you have, aged 15

What did your mum do for fun at the age of fun when she was 15? What sort of career prospects did she have? What sort of food would she have eaten and what would she have viewed as cool? This essay is going to attempt to explore the differences between my mum's life at 15 and mine. My mum at 15 went to a boarding school in Devon, and so her leisure time was structured. My mothers TV viewing was decided by two prefects and the headmistress. At 15 I mostly choose what I watch on television and this varies from Eastenders to Big Brother, whereas the highlight of my mothers viewing every week was TOTP. The girls were never allowed into town except for dental treatment and could only go to the shops if the matron's helper was in a good mood and would let them. By the lower fifth (year 10) the year would have its own common room where they would listen to records by the Rolling Stones and Tamla Motown and talk. My mother told me that after half terms and exeats she and her friends having pooled their money together would have midnight feasts. Midnight feasts are now a feature of most sleepovers and shopping in town is a regular occurrence. As for music it has progressed from records to CDs and from the Rolling Stones to the Darkness. Although we do not have a common room we are now from year 10 upwards aloud to be in our form room at lunch. When my mother was 15 job prospects for women were still pretty limited and the expectation was that women should have a job but should give it up once married to look after the house and any children. There were few respectable professions for women. There example are nursing, teaching and secretarial work. This is very different from the prospects for women today. Today so long as you have the qualifications you can get almost anywhere. In 1970 there were no convenience foods such as pizza from the freezer. My mother remembers most mornings being able to have either a cooked breakfast or toast and cereal. At least once a week there would be a roast dinner as well as Sundays, and also a salad once a week. Desserts were traditionally stodgy such as spotted dick and jam roly poly. There were sometimes non-traditional foods such as paella as the school employed a Spanish cook. Today you can acquire most traditional foods at supermarkets as convenience foods though puddings at school still are mostly the same such as chocolate sponge. Roasts are not as frequent and at most schools you can have salad any day of the week, also food from other cultures are quite common. Fashion styles may have changed since my mother was 15 but the fact that if you were not in the most up to date fashions then you are considered ‘Square' has not. When my mother was 15 mini skirts had just gone out of fashion and skirts had gone to the opposite extreme of maxi skirts. Fashions were more fixed, it was either one thing or another and they did not change as often as today. There are 34 yrs between me and my mum being 15 and though some fashions and the names of the bands that teenagers listen to have changed. Teenagers still follow fashion avidly and try to break as many rules as possible even if boundaries have become wider. Prospects and boundaries may have widened but in essence things have stayed the same.

How Feature Writers Use Delayed Ledes

A lede, usually used in feature stories, that can take several paragraphs to begin to tell a story, as opposed to hard-news ledes, which must summarize a storys main points in the first paragraph. Delayed ledes can use description, anecdotes, scene-setting or background information to pull the reader into the story. How Delayed Ledes Work A delayed lede, also called a feature lede, is used on feature stories and allows you to break free of the standard hard-news lede, which must have the who, what, where, when, why, and how and outline the main point of the story in the very first sentence. A delayed lede allows the writer to take a more creative approach by setting a scene, describing a person or place or telling a short story or anecdote. If that sounds familiar, it should. A delayed lede is much like the opening of a short story or novel. Obviously, a reporter writing a feature story doesnt have the luxury of making things up the way a novelist does, but the idea is much the same: Create an opening to your story that will make the reader want to read more. The length of a delayed lede varies depending on the kind of article and whether you are writing for a newspaper or magazine. Delayed ledes for newspaper feature articles generally last no more than three or four paragraphs, while ones in magazines can go on much longer. The delayed lede is generally followed by whats called the nutgraph, which is where the writer explains what the story is all about. In fact, thats where the delayed lede gets its name; instead of the main point of the story being outlined in the very first sentence, it comes several paragraphs later. Example Heres an example of a delayed lede from the Philadelphia Inquirer: After several days in solitary confinement, Mohamed Rifaey finally found relief in pain. He would wrap his head in a towel and whack it against the cinder-block wall. Over and over. Im going to lose my mind, Rifaey recalls thinking. I begged them: Charge me with something, with anything! Just let me out to be with people. The illegal alien from Egypt, now finishing his fourth month in custody in York County, Pa., is among hundreds of people caught on the wrong side of the domestic war on terrorism. In interviews with The Inquirer inside and out of jail, several men described long detentions on minimal or no charges, unusually stiff bond orders, and no allegations of terrorism. Their tales have worried civil libertarians and immigration advocates. As you can see, the first two paragraphs of this story constitute the delayed lede. They describe the inmates anguish without explicitly stating what the story is about. But in the third and fourth paragraphs, the angle of the story is made clear. You can imagine how might have been written using a straight-news lede: Civil libertarians say many illegal aliens have recently been jailed recently as part of the domestic war on terrorism, despite the fact that many have not been charged with any crime. That certainly sums up the main point of the story, but of course, its not nearly as compelling as the image of the inmate banging his head against the wall of his cell. Thats why journalists use delayed ledes — to grab a readers attention, and never let go.