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. 2025 Jun;45(6):755-766.
doi: 10.1038/s41372-025-02255-8. Epub 2025 Mar 5.

Voices of parents of children with major congenital anomalies admitted to the NICU: initial diagnosis, hospitalization, and discharge home

Jessica Lyon  1 , Natalie McAndrew  2   3 , Alexis Geich  1 , Tala AbuZahra  2 , Steven R Leuthner  1 , Joanne Lagatta  1 , Krishna Acharya  4
Affiliations

Voices of parents of children with major congenital anomalies admitted to the NICU: initial diagnosis, hospitalization, and discharge home

Jessica Lyon et al. J Perinatol. 2025 Jun.

Abstract

Objective: To identify challenges vs. supports in the NICU and after NICU discharge for parents of an infant with a major congenital anomaly.

Study design: Qualitative study.

Results: We interviewed 18 parents (13 mothers, 5 fathers) whose children were admitted to our our NICU with a major congenital anomaly. In the NICU, challenges were navigating parenthood with significant impact on parent mental health, adjusting to changing healthcare providers, and need for better interdisciplinary communication. After discharge home, challenges were an initial adjustment to life without NICU monitoring, loss of NICU medical resources, burden of caregiving, continued healthcare utilization, and financial impact.

Conclusion: Key supports that were helpful to families were empathetic and consistent healthcare teams throughout their care journey, especially nurses; healthcare team members who went beyond medical care, consistent communication, parent engagement in NICU care, ongoing parent mental health support, and peer resources after discharge home.

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Conflict of interest statement

Competing interests: The authors declare no competing interests.

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