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Trisomy 18 and complex congenital heart disease: seeking the threshold benefit
Renee D Boss1, Kathryn W Holmes, Janyne Althaus
1Department of Pediatrics, Johns Hopkins University School of Medicine, Johns Hopkins University School of Nursing, Baltimore, MD, USA. rboss1@jhmi.edu
Insights
Prenatal diagnosis of complex congenital heart disease in trisomy 18 presented ethical challenges. Medical teams debated treatment burdens versus neonatal benefits, prompting an ethics consultation.
Area of Science:
- Medical Ethics
- Neonatal Cardiology
- Prenatal Diagnosis
Background:
- A fetus with trisomy 18 was diagnosed prenatally with ductal-dependent, complex congenital heart disease.
- Parents requested exclusion of genetic diagnosis from medical decisions and full life-prolonging therapies for their infant.
Observation:
- Conflict arose within the medical team regarding the threshold of neonatal benefit to justify maternal and neonatal treatment burdens.
- A prenatal ethics consultation was requested to address the complex ethical dilemma.
Findings:
- The case highlights the intricate ethical considerations in managing complex congenital heart disease in fetuses with chromosomal abnormalities.
- Disagreements centered on balancing potential neonatal outcomes against the burdens of intensive medical interventions.
Implications:
- Prenatal ethics consultations are crucial for navigating complex decisions in fetal medicine and congenital heart disease.
- This case underscores the need for clear guidelines and communication protocols when parental wishes conflict with medical team recommendations.
- It emphasizes the importance of considering quality of life and treatment burdens in neonatal care decisions.
Abstract:
A prenatal diagnosis of ductal-dependent, complex congenital heart disease was made in a fetus with trisomy 18. The parents requested that the genetic diagnosis be excluded from all medical and surgical decision-making and that all life-prolonging therapies be made available to their infant. There was conflict among the medical team about what threshold of neonatal benefit could outweigh maternal and neonatal treatment burdens. A prenatal ethics consultation was requested.
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