Clinical Case Report Hypoplastic Left Heart Syndrome – Get Paper Help

Clinical Case Report

Hypoplastic Left Heart Syndrome

Instructions:

For this assignment you will take the role of a physician or genetic counselor who must advise two patients struggling to understand a recent diagnosis for their unborn child.

1. Read the patient description.
2. Use the articles on Blackboard for background & perspectives on the disorder. You do not need to cite information from the articles on Blackboard. If you find any of your own sources, include a full citation at the end of the paper. Use any citation format.
3. Answer the 5 patients’ questions below. You can write in the form of a dialogue and answer the numbered questions. Pretend that you are a physician or genetic counselor, and these are your patients. This requires balancing multiple responsibilities:

1. Provide accurate information in plain language. Try to avoid using jargon (technical terms the parents may not be familiar with) unless the patient requests a more technical explanation. When you must use technical terms, explain them.

Jargon, impersonal: “The aorta is stenosed and the left ventricular ejection fraction is 37%.”

Jargon-free, personal: “His aorta is very narrow and the heart cannot pump blood out efficiently.”

1. Be concise, but thorough. Tell them the critical information to answer their questions first. Imagine you have only a 15 minute office visit to discuss the test results today (with a follow up appointment next week). Provide resources where they can find more information.

1. Be compassionate and non-judgmental. Understand that this is upsetting news, and your patients may have many different emotions about it. Try to give information about the choices available, while letting the patient make their own decisions. Avoid making moral or ethical judgements based on what you feel should be done.

4. Use your own words. You may consult with other students about the assignment, but the write-up must be done independently. Your answers should be 3/4 page to 2 pages maximum, single-spaced with 1 inch margins.

Grading rubric: Information provided is accurate (4 pts). Information is presented in plain language; technical terms are explained (4 pts). All options are presented (4 pts). Options are presented without bias or judgement (4 pts). All 5 patient questions are answered (4 pts). Please proofread and use proper grammar. Your writing skill is not being explicitly assessed but you should strive to express yourself clearly. Total = 20 points.

Patient Description:

John (23 years old) and Marta (21) are a young married couple living in Flat Rock, Illinois. Flat Rock is a rural area in southeastern Illinois. They are visiting your office at Crawford Memorial Hospital, a small hospital 20 minutes away. Although there are several hospitals in the area, the closest specialists in fetal/infant cardiac surgery are in Indianapolis (2 hours away), Louisville (2.5 hrs), and St. Louis (3 hrs).  Marta works as a home health aide and John is a laborer at Raber Turkey Farms. Neither have health insurance. They are both healthy.

Marta is 19 weeks pregnant with the couple’s first child. The pregnancy was unplanned but they are both excited to be parents. At the 18 week ultrasound, the size of the fetus was normal and you determined Marta will have a baby boy. However, some abnormalities were detected in their son’s heart. You recommended they have a fetal echocardiogram to better diagnose what may be wrong. The results of the echocardiogram showed that the fetus’ left ventricle is very small. The tests estimate the left ventricle can hold only 10% of its normal volume of blood. The fetus’s aorta is constricted, the right ventricle is enlarged, and both atrial and ventricular septal defects are present. Based on this information, the fetus has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS).

Today Marta and John will come to your office for a follow-up to receive the results of the echocardiogram tests. You must present this diagnosis to them and what treatment options are available. Some options are:

• Travel to Indianapolis or another city to see a fetal cardiac specialist. The specialist can provide more information and develop a treatment plan. Specialist treatment may include in utero surgery, reconstructive surgeries after birth, transplant, or palliative care (treating the symptoms to relieve pain and improve quality of life, without correcting the problem itself).
• Receive palliative care at Crawford or another local hospital after their son is born.
• The couple may consider abortion. Note that abortion is prohibited in Illinois after the fetus reaches 23-24 weeks of gestation (unless the health of the mother is at risk).

An assistant brings John and Marta into your office.

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You:  Hello John, Marta, please come in. How have you been?

Marta: We’re doing good, just working and trying to save money before the baby comes. I’ve been waking up nauseous sometimes but it settles down after I eat breakfast. I don’t throw up anymore.

You: Well that’s normal, I’m glad you found a way to calm your stomach down. Some women have morning sickness throughout their pregnancy.

John: Did you get the test results back?

You: Yes we did, and that’s what I wanted to speak with you about today. I’m very sorry to tell you that the tests showed some serious problems with the baby’s heart. Your son is safe right now, but he has a condition that will endanger his life after he is born. The echocardiogram shows that one side of his heart [shows diagram of normal vs HLHS heart] is not growing. This part of the heart [traces outline of the ventricles] is a muscle, it pumps blood out to the body. When it does not form correctly, the heart will not be able to pump oxygen throughout the body. This disease is called Hypoplastic Left Heart Syndrome. It’s very rare and quite serious, but there are some things we can do to treat it.

1. Marta: Like what? Can you fix it?

You:

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2. John: If he has the surgeries, what kind of life can he have? Will he have to stay inside all the time, will he be able to run and play outside?

You:

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3. Marta: That sounds expensive. What if we can’t afford the surgeries? What will happen to him if we can’t?

You:

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4. John: I don’t understand why this happened. I mean, we’re both young, we eat right and try to do everything right for the baby. My mom said I had a murmur when I was born, could it be because of that?

You:

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5. Marta: What should we do now?

You:

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