Hypoplastic Left Heart Syndrome: A Paradigm Case for Examining Conscientious Objection in Pediatric Practice

Ross, Lainie Friedman; Frader, Joel

doi:10.1016/j.jpeds.2009.03.008

Cited by 18 publications

(6 citation statements)

References 24 publications

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“…Counselors should refrain from imposing personal bias into the discussion and should strive for the goal of providing families with all of the tools and support necessary to come to a decision that is best suited for them. 417 …”

Section: Decision Makingmentioning

confidence: 99%

Diagnosis and Treatment of Fetal Cardiac Disease

Donofrio¹,

Moon-Grady²,

Hornberger³

et al. 2014

Circulation

1,020

543

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Background— The goal of this statement is to review available literature and to put forth a scientific statement on the current practice of fetal cardiac medicine, including the diagnosis and management of fetal cardiovascular disease. Methods and Results— A writing group appointed by the American Heart Association reviewed the available literature pertaining to topics relevant to fetal cardiac medicine, including the diagnosis of congenital heart disease and arrhythmias, assessment of cardiac function and the cardiovascular system, and available treatment options. The American College of Cardiology/American Heart Association classification of recommendations and level of evidence for practice guidelines were applied to the current practice of fetal cardiac medicine. Recommendations relating to the specifics of fetal diagnosis, including the timing of referral for study, indications for referral, and experience suggested for performance and interpretation of studies, are presented. The components of a fetal echocardiogram are described in detail, including descriptions of the assessment of cardiac anatomy, cardiac function, and rhythm. Complementary modalities for fetal cardiac assessment are reviewed, including the use of advanced ultrasound techniques, fetal magnetic resonance imaging, and fetal magnetocardiography and electrocardiography for rhythm assessment. Models for parental counseling and a discussion of parental stress and depression assessments are reviewed. Available fetal therapies, including medical management for arrhythmias or heart failure and closed or open intervention for diseases affecting the cardiovascular system such as twin–twin transfusion syndrome, lung masses, and vascular tumors, are highlighted. Catheter-based intervention strategies to prevent the progression of disease in utero are also discussed. Recommendations for delivery planning strategies for fetuses with congenital heart disease including models based on classification of disease severity and delivery room treatment will be highlighted. Outcome assessment is reviewed to show the benefit of prenatal diagnosis and management as they affect outcome for babies with congenital heart disease. Conclusions— Fetal cardiac medicine has evolved considerably over the past 2 decades, predominantly in response to advances in imaging technology and innovations in therapies. The diagnosis of cardiac disease in the fetus is mostly made with ultrasound; however, new technologies, including 3- and 4-dimensional echocardiography, magnetic resonance imaging, and fetal electrocardiography and magnetocardiography, are available. Medical and interventional treatments for select diseases and strategies for delivery room care enable stabilization of high-risk fetuses and contribute to improved outcomes. This statement highlights what is currently known and recommended on the basis of evidence and experience in the rapidly advancing and highly specialized field of fetal cardiac care.

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Section: Decision Makingmentioning

confidence: 99%

Diagnosis and Treatment of Fetal Cardiac Disease

Donofrio¹,

Moon-Grady²,

Hornberger³

et al. 2014

Circulation

1,020

543

View full text Add to dashboard Cite

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“…The ethical literature continues to show although the outcomes for HLHS have improved, and there might be a recommended medical plan, they have not yet reached the level for which palliative care is not an acceptable choice that parents should be informed about. 21,38,39 In this case, and at this institution, the standard practice is to allow parents of infants with HLHS to choose surgery or EOL care. The neonatologist is correct to suggest that based on justice, because the medical conditions are reasonably equivalent, if it is reasonable to offer EOL care in cases of HLHS, it is reasonable to offer it in cases of TA.…”

Section: Steven Leuthner MD Neonatologist Commentsmentioning

confidence: 99%

Parental Refusal of Surgery in an Infant With Tricuspid Atresia

et al. 2016

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We present a case of a fetal diagnosis of tricuspid atresia (TA). The pregnant woman and her husband requested that the baby be treated with only palliative care. The cardiologist did not think it would be appropriate to withhold life-prolonging surgery once the infant was born. The neonatologist argued that outcomes for TA are similar to those for hypoplastic left heart syndrome, and the standard practice at the institution was to allow parents to choose surgery or end-of-life care for those infants. The team requested an ethics consultation to assist in determining whether forgoing life-prolonging interventions in this case would be ethically supportable. In this article, we ask a pediatric intensivist, a pediatric cardiologist, and a neonatologist to discuss the ethics of withholding life-sustaining treatment of a baby with TA.

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“…Other drawbacks of heart transplantation include complications while waiting for an organ, early graft failure and the need for lifelong immunosuppressant administration (ClaxonMcKinney, 2001). Some patients who have received palliative surgery may require a heart transplant, depending on results of palliation (Ross & Frader, 2009). …”

Section: Treatment Optionsmentioning

confidence: 99%

Hypoplastic Left Heart Syndrome: Parent Support for Early Decision Making

Toebbe

Yehle

Kirkpatrick

et al. 2013

Journal of Pediatric Nursing

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No extramural funding has been provided for this manuscript. No previous presentations of this manuscript have been made. No commercial financial support has been provided for this manuscript.Hypoplastic Left Heart Syndrome is a life threatening congenital cardiac anomaly. After a child has been diagnosed with hypoplastic left heart syndrome, parents must make life or death decisions within days of birth. Healthcare providers must provide appropriate education so that parents are able to make informed, timely decisions. Information regarding the diagnosis, treatment options, and parental decision making process for initial decision making for hypoplastic left heart syndrome are provided to guide nurses who work with these families. The challenging decision making process which parents must go through after diagnosis of hypoplastic left heart syndrome will be described.Rachel and Evan, a young couple expecting their first child, received unexpected and devastating news at the completion of a routine screening ultrasound at 20 weeks. The ultrasound revealed that their unborn son had a congenital heart defect. After further testing, the diagnosis of hypoplastic left heart syndrome (HLHS) was confirmed. Rachel and Evan received information about HLHS from several physicians, made an appointment with a pediatric cardiothoracic surgeon to discuss surgical options, and found information from pediatric hospitals and HLHS online support groups. Ultimately, Rachel and Evan had decisions to make. After several sleepless nights of reviewing information, statistics, options, and prognosis, they elected to continue with the pregnancy and give their son a chance at life.

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Hypoplastic Left Heart Syndrome: A Paradigm Case for Examining Conscientious Objection in Pediatric Practice

Cited by 18 publications

References 24 publications

Diagnosis and Treatment of Fetal Cardiac Disease

Diagnosis and Treatment of Fetal Cardiac Disease

Parental Refusal of Surgery in an Infant With Tricuspid Atresia

Hypoplastic Left Heart Syndrome: Parent Support for Early Decision Making

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