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News Coverage of Exceptional Cases and Making Complex Clinical Decisions

May 28, 2024

The survival of Abigail Rose Beutler, the daughter of US Rep. Jaime Herrera Beutler, brought public attention to the treatment of severe congenital anomalies of the kidneys and urinary tract (CAKUT). Abigail was diagnosed with bilateral renal agenesis, a condition historically considered lethal, in the second trimester of pregnancy. Jaime underwent serial amnioinfusions (infusions of saline into her uterus) in the hope of promoting Abigail’s lung maturation. Abigail was born at 28 weeks and survived. She was treated with dialysis before undergoing a living related kidney transplant. National media coverage of Abigail’s care brought many parents hope. 

In this month’s Pediatric Ethics Rounds (10.1542/peds.2023-064720), Drs. Donna Claes, Kara Markham, and DonnaMaria Cortezzo from the University of Cincinnati and the University of Connecticut discuss the ethical issues in the treatment of severe CAKUT. This treatment potentially involves not only serial amnioinfusions, but also intensive care, dialysis, and transplant. It is not currently possible to predict which individuals will survive, and those who survive experience significant morbidity. The authors discuss the importance of multidisciplinary counseling offering termination, comfort measures only, and invasive interventions. This process is particularly complex because the amnioinfusions pose risks to the pregnant person for the benefit of the fetus. The potential benefits and risks of treatment are not only medical but also psychological, social, and financial. For example, families may need to relocate to receive care in specialized centers.

If your fetus had severe CAKUT, which option would you choose? How would you counsel pregnant persons making this complex decision? What are the relevant outcomes for clinical trials? How can the healthcare system provide better access to the full range of treatment options? Read this month’s Ethics Rounds and see what you think.

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