381 - Hope, Burden, and Communication: Parental Perspectives on Pursuing Serial Amnioinfusions for Early Pregnancy Renal Anhydramnios

Publication Number: 4373.381

Kristen Fishler Malone, Children's Nebraska, Omaha, NE, United States; Kimberly R.. Marsh, Chil, Gretna, NE, United States; Mandy Pflaster, Children's Nebraska, Omaha, NE, United States; Jenna Schaecher, Child, Omaha, NE, United States; Abby Kelly, Children's Nebraska, Omaha, NE, United States; Kalie Steele, Children's Nebraska, Bellevue, NE, United States; Marie L. Neumann, University of Nebraska Medical Center, Omaha, NE, United States; David Soffer, Children's Nebraska/UNMC, Papillion, NE, United States

Background: Early pregnancy ( < 22 weeks' gestation) renal anhydramnios (EPRA) is considered fatal to the fetus without serial amnioinfusions and neonatal dialysis. Although amnioinfusion is not currently considered standard care for EPRA, it may be offered to some parents as an experimental treatment option. Conversations surrounding decision making about this intervention often involve profound ethical and emotional complexities, yet little is known about how families make decisions in this context of uncertainty.

Objective: We aimed to explore parental decision-making to pursue serial amnioinfusions, their perceived positive and negative impacts of this choice, and how they experienced communication with clinicians across the perinatal continuum.

Design/Methods: We conducted an IRB-approved qualitative study with the parents of four families who pursued serial amnioinfusions between 2024 and 2025 at a single academic fetal care center whose infants survived to dialysis. Parents were interviewed separately. Semi-structured interviews were conducted postnatally, transcribed, coded, and analyzed using thematic analysis. Codes were compared across two coders using a consensus approach (intercoder agreement >80%).

Results: Eight parents were interviewed comprising four mothers and four fathers within the first few months of their infant's life (table 1). Factors influencing parental decision making included: desire to "give their child a chance," information found via social media, and faith or religion. When considering the impacts of the decision to pursue amnioinfusions, some families described moments of personal growth, while all reported significant emotional, financial, and relational burden-including anxiety, marital stress, caregiving burden, and impacts on other children. The tone, openness, and framing of clinician communication were central in shaping families' understanding of options. Trust was enhanced when providers were honest about uncertainties while affirming parental values and autonomy.

Conclusion(s): Parents facing EPRA make emotionally charged decisions amid uncertainty and risk. While serial amnioinfusions remain experimental, families may view the intervention as a pathway to hope and agency. These choices carry complex emotional and logistical burdens. Clinicians can support families by communicating openly, acknowledging uncertainty, and affirming parental values. Our findings highlight the need for interdisciplinary, family-centered care which includes psychosocial and spiritual support alongside clinical innovation.

Table 1. Participant Demographics


Table 2. Major Themes and Coding Frequencies
This table shows the number of interviews the code was mentioned, as well as the number of times the code was used across the entire data set.