On a snowy night in Lexington, Kentucky, in 1964, Dr. David Henry’s wife, Norah, gives birth to twins. The first is Paul, a healthy baby boy. The second, unexpected baby is Phoebe, a girl with Down syndrome.
According to the National Down Syndrome Society, Down syndrome was first recognized in 1866 by British physician John Langdon Down. He helped to set the condition apart from mental disability by coining the first term used to describe those with Down syndrome: “mongoloid”.
The case history for Martha will then guide you through the assessment, nursing action and evaluation of a patient with heart failure. A definition of heart failure was given in Chapter 1 and asked you to revise your anatomy and physiology (see Montague et al 2005 ).
• Martha is unable to eat or drink adequately due to her condition. • Martha is a life-long smoker and cannot smoke in hospital. 1. Problem: Martha is breathless.
Finally in 1960, one of the very first local organizations in support of those with Down syndrome was formed by a woman named Kay McGee after her daughter was diagnosed with the condition. Kay and her husband Marty disregarded common practice and chose not to institutionalize their daughter, Tricia.
When Down syndrome was first being discovered, it was common practice to separate children with the genetic condition and other mental disabilities from society.
Down Syndrome occurs when an individual has a full or partial extra copy of chromosome 21, a condition which can cause mental and physical disabilities. Approximately 6,000 babies are born with Down syndrome each year in the United States. That is one out of every 691 babies, making Down syndrome the most common genetic condition.
Every day more and more Americans are interacting with people who have Down syndrome, which only increases the need for widespread awareness of the genetic condition and, most importantly, the acceptance of those who have it.
In Down’s opinion, the children with the genetic condition shared similar characteristics to the people of the Mongolian race. The term “Down syndrome” was suggested later by a group of geneticists who wrote to the British medical journal, The Lancet, with four alternatives to “mongoloid.”. Down syndrome was later endorsed by ...
As late as the 1980s, there were doctors that classified feeding a baby with Down syndrome as a lifesaving procedure and would instead starve babies with Down syndrome or other disabilities to death. Eventually, governors in all 50 states created legislation to ban the practice.
From the mid-1800s to as late as the 1990s in some cases, people with Down syndrome were often discriminated against.
Down syndrome has been in the news in part because several states have considered or passed legislation to keep people from getting an abortion solely because prenatal testing indicates a baby could have Down syndrome.
Parents comment that children with Down syndrome live in the present — something kids generally do well and adults do poorly as their thoughts bounce between past, present and future and the worries that populate each realm.
Kris and Paul When Paul was born in 1963, the doctors didn’t give his mother, Lorraine, much hope. She says that the doctors told her that her son would be better off in an institution than with her own parents. She didn’t listen to the doctor’s advice, and she took him home. Paul’s family showered him with love and affection.
When Kris was born, her parents were told the same thing by the doctors that Paul’s family was told. The doctors told her parents that she would be better off in a group home. Kris had seven siblings, and her parents ignored the doctor’s recommendations.
The condition, Down syndrome, is named after, John Langdon Down. In 1866, the British doctor wrote the first accepted paper on the condition, which defined the syndrome’s traits. He was the first person to see it as a stand-alone medical condition. The condition isn’t rare.
People with Down syndrome show specific characteristics. The person tends to be shorter than average, and possess lower muscle density. They tend to have slanted eyes and often are learning disabled or experience cognitive delays. None of this prevents them from living productive, full lives.
Paul and Kris met and fell in love. The couple wanted to get married. Paul popped the question, and Kris said yes. The couple was engaged for five years, and they wanted to start planning their wedding. Unfortunately, when it came to people with Down syndrome getting married, there were obstacles.
Kris and Paul proved that their marriage was built to stand the test of time. They celebrated their 25th anniversary together and had a party with family and friends. Sadly, things took a turn for the worst.
Sadly, Paul’s health continued to decline right before her husband’s eyes. She stayed by his side and worried when he developed a UTI and pneumonia. Kris was trying to be there for her husband, but she had medical problems of her own. She had type 1 diabetes and developed pneumonia, as well.
On a snowy night in Lexington, Kentucky, in 1964, Dr. David Henry’s wife, Norah, gives birth to twins. The first is Paul, a healthy baby boy. The second, unexpected baby is Phoebe, a girl with Down syndrome. Shocked by Phoebe’s birth and knowing that Norah will not remember the events of the night because she was under anesthesia, David tells Caroline Gill, the attending nurse, to take the baby girl to an institution for the intellectually disabled. After Caroline leaves, David tells Norah that their baby girl died.
She earns a free vacation to Aruba for herself, David, and their teenager Paul. In Aruba, she cheats on David with a man named Howard. Unbeknownst to her, David and Paul become aware of her adultery.
David and Paul clash often: Paul is a talented guitarist and wants to pursue a career in music , but David wants him to do something more practical. In Pittsburgh, Doro moves and gifts her house to Caroline and Al. David sends word that he would like to meet Phoebe.
The two women start the Upside Down Society, an advocacy group devoted to gaining equal access to education and other opportunities for children with Down syndrome. After much searching, Al finds Caroline, and the two begin a romantic relationship. After five years of dating, they marry.
Five years later, David has become a famous photographer and is invited to give a lecture in Pittsburgh, which Caroline attends. During the reception, David ushers her into a janitor’s closet so that they can talk privately.
Phoebe, now in her twenties, has a boyfriend named Robert who also has Down syndrome. They want to marry, but Caroline has trouble accepting that Phoebe can live on her own with him. While at a dance organized by the Upside Down Society, Caroline catches Phoebe and Robert kissing.
Due to her cardiac failure, Martha is at risk of fluid overloadTo ensure that Martha receives adequate fluids and nutritionTo prevent complications of dehydrationTo ensure that there is effective communication within the multidisciplinary team.
Martha is tachycardic and attached to a cardiac monitor which is showing atrial fibrillation between 110 and 115 bpm. Urinary output is greater than 70 mL/hour. Martha is very distressed but knows where she is and why. She is unable to eat or drink at the moment due to her breathlessness. She is a life-long smoker.
Martha is a 60-year-old lady who is admitted to accident and emergency (A&E) with breathlessness – her respiratory rate is 40 per minute and her oxygen saturation is 89%. On admission, her pulse is 175 beats per minute (bpm) and irregular. Her blood pressure is 90/50 mmHg. Martha is put on high-flow oxygen, a continuous cardiac monitor, hourly observation of vital signs and an intravenous cannula is inserted. Martha is administered intravenous digoxin and furosemide in A&E and is catheterised to enable accurate fluid balance. Martha is married with three grown-up children and smokes 20 cigarettes a day. Martha is then transferred to a medical ward with a cardiac specialty.
Martha is breathless and on oxygen therapy 35% via the mask. She has peripheral oedema and is fluid overloaded. Furosemide is being administered intravenously. She is on stage 2 (see Fig. 13.1) of the heart failure care plan but is not receiving glyceryl trinitrate (GTN) due to hypotension.