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

Journal of Perinatology volume 45, pages 755–766 (2025)Cite this article

Subjects

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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Data availability

The dataset generated and analyzed during the current study are not publicly available due to privacy reasons as they include patient or parent identifiers but written transcripts with identifiers removed may be available from the corresponding author on reasonable request.

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Acknowledgements

The research team is grateful to Monica McLeod, former NICU parent, who reviewed the study design and interview guide and provided critical feedback. We are grateful to all the parents who participated in the research study and thank them for their contributions.

Funding

This study was internally supported by funds from the Department of Pediatrics, Children’s Wisconsin.

Author information

Authors and Affiliations

  1. Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA

    Jessica Lyon, Alexis Geich, Steven R. Leuthner, Joanne Lagatta & Krishna Acharya

  2. University of Wisconsin Milwaukee, School of Nursing, Milwaukee, WI, USA

    Natalie McAndrew & Tala AbuZahra

  3. Froedtert & the Medical College of Wisconsin, Milwaukee, WI, USA

    Natalie McAndrew

Authors
  1. Jessica Lyon
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  2. Natalie McAndrew
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  3. Alexis Geich
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  5. Steven R. Leuthner
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  6. Joanne Lagatta
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  7. Krishna Acharya
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Contributions

JS screened and interviewed parents, conducted data analysis and wrote the first draft of the manuscript; NM contributed to study design, interview guide preparation, data analysis, and revision of manuscript; AG screened and interviewed parents and assisted in manuscript writing; TAZ screened and interviewed parents and assisted in manuscript writing; SL contributed to study design, interview guide preparation, data analysis and preparation of manuscript; JL contributed to study design and preparation of manuscript, KA designed the study, oversaw study implementation, conducted data analysis, and prepared final manuscript.

Corresponding author

Correspondence to Krishna Acharya.

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The authors declare no competing interests.

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Supplementary information

41372_2025_2255_MOESM1_ESM.docx (download DOCX )

Supplemental Table: Parents’ Experiences of their Child’s Anomaly during the Prenatal Period: Themes, Subthemes and Exemplar Quotes

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Lyon, J., McAndrew, N., Geich, A. et al. Voices of parents of children with major congenital anomalies admitted to the NICU: initial diagnosis, hospitalization, and discharge home. J Perinatol 45, 755–766 (2025). https://doi.org/10.1038/s41372-025-02255-8

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