NARRATIVE REVIEW
Holistic, family-centered care plan for neonates with bilateral renal agenesis
More details
Hide details
1
Τμήμα Μαιευτικής, Πανεπιστήμιο Δυτικής Αττικής, Αθήνα, Ελλάδα
These authors had equal contribution to this work
Submission date: 2025-04-23
Acceptance date: 2025-05-30
Publication date: 2025-07-30
Corresponding author
Δήμητρα Μεταλλινού
Τμήμα Μαιευτικής, Πανεπιστήμιο Δυτικής Αττικής, Αγ. Σπυρίδωνος 28, 12243, Αιγάλεω, Ελλάδα
ΕΛΕΥΘΩ 2025;24(3):8
KEYWORDS
TOPICS
ABSTRACT
Introduction:
Bilateral renal agenesis (BRA) is a rare yet particularly severe congenital anomaly, associated with high
perinatal mortality. This narrative review aims to outline a holistic, family-centered care plan for neonates with BRA.
Methods:
This narrative review was based on case reports, qualitative studies, narrative and scoping reviews, concept
analyses, expert opinion studies and good practice recommendations, retrospective studies, clinical trials, as well as
presentations of theoretical models. Sources were identified through searches in electronic databases such as PubMed,
Google Scholar, and EBSCO, including publications in English and Greek from 1994 to 2025, using MeSH terms. Data
selection and extraction were performed independently by three authors, with disagreements resolved through discussion
with a fourth author. No formal quality assessment of the studies was conducted.
Results:
Analysis of the studies revealed six key thematic axes in the care of neonates with BRA: (1) the possibilities
and limitations of medical intervention, (2) active parental involvement in decision-making, (3) addressing psychological,
emotional, and social needs, (4) individualized support based on values and cultural particularities, (5) integration of palliative
care principles, and (6) promotion of a human-centered approach to care.
Conclusions:
Effective management of BRA requires an interdisciplinary approach that combines scientific excellence
with ethical and empathy. The integration of family-centered, culturally sensitive, and palliative practices emerges as a
necessary condition for providing holistic and human-centered care in contexts of clinical uncertainty.
CONFLICT OF INTEREST
The authors have completed and submitted the ICMJE Form for
Disclosure of Potential Conflicts of Interest and none was reported.
FUNDING
There was no source of funding for this research.
ETHICAL APPROVAL
Ethical approval and informed consent were not required for this study.
DATA AVAILABILITY
Data sharing is not applicable to this article as no new data were
created.
PEER REVIEW INFORMATION
Not commissioned; externally peer reviewed.
DISCLAIMER
D. Metallinou, Editorial Board member of the journal, had no
involvement in the peer-review or acceptance of this article and had
no access to information regarding its peer-review. Full responsibility
for the editorial process for this article was delegated to a handling
editor of the journal.
REFERENCES (32)
1.
Bhandari J, Thada PK, Sergent SR. Potter Syndrome. StatPearls Publishing; 2023.
2.
Bienstock JL, Birsner ML, Coleman F, Hueppchen NA. Successful in utero intervention for bilateral renal agenesis. Obstet Gynecol. 2014;124(2 Pt 2 Suppl 1):413-415. doi:10.1097/AOG.0000000000000339
3.
Boss RD, Hutton N, Sulpar LJ, West AM, Donohue PK. Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics. 2008;122(3):583-589. doi:10.1542/peds.2007-1972
4.
Cameron D, Lupton BA, Farquharson D, Hiruki T. Amnioinfusions in renal agenesis. Obstet Gynecol. 1994;83(5 Pt 2):872-876
5.
Carlsson T, Starke V, Mattsson E. The emotional process from diagnosis to birth following a prenatal diagnosis of fetal anomaly: a qualitative study of messages in online discussion boards. Midwifery. 2017;48:53-59. doi:10.1016/j.midw.2017.02.010
6.
Côté-Arsenault D, Denney-Koelsch E. "My baby is a person": parents' experiences with life-threatening fetal diagnosis. J Palliat Med. 2011;14(12):1302-1308. doi:10.1089/jpm.2011.0165
7.
Craig JW, Glick C, Phillips R, Hall SL, Smith J, Browne J. Recommendations for involving the family in developmental care of the NICU baby. J Perinatol. 2015;35(Suppl 1):S5-S8. doi:10.1038/jp.2015.142
8.
de Morais Almeida SL, de Carvalho LIA, Araujo Júnior E, Byk J, da Rocha Amorim LA. The role of spirituality in the well-being of families with children with congenital heart disease: scoping review. Transl Pediatr. 2024;13(8):1457-1468. doi:10.21037/tp-24-134
9.
Dephoure S, Cummings B. Decision aids as tools to facilitate shared decision making in neonatal care: a standardization analysis. Bioethics Open Research. 2023;1:1-21. doi:10.12688/bioethopenres.17463.1
10.
Franck LS, Waddington C, O'Brien K. Family integrated care for preterm infants. Crit Care Nurs Clin North Am. 2020;32(2):149-165. doi:10.1016/j.cnc.2020.01.001
11.
Garten L, Globisch M, von der Hude K, et al. Palliative care and grief counseling in peri- and neonatology: recommendations from the German PaluTiN group. Front Pediatr. 2020;8:67. doi:10.3389/fped.2020.00067
12.
Glyn-Blanco MB, Lucchetti G, Badanta B. How do cultural factors influence the provision of end-of-life care? A narrative review. Appl Nurs Res. 2023;73:151720. doi:10.1016/j.apnr.2023.151720
13.
Harewood L, Liu M, Keeling J, et al. Bilateral renal agenesis/hypoplasia/dysplasia (BRAHD): postmortem analysis of 45 cases with breakpoint mapping of two de novo translocations. PLoS One. 2010;5(8):e12375. doi:10.1371/journal.pone.0012375
14.
Kalpana Kumari MK, Kamath S, Mysorekar VV, Nandini G. Fraser syndrome. Indian J Pathol Microbiol. 2008;51(2):228-229. doi:10.4103/0377-4929.41664
15.
Kim AR. Addressing the needs of mothers with infants in the neonatal intensive care unit: a qualitative secondary analysis. Asian Nurs Res (Korean Soc Nurs Sci). 2020;14(5):327-337. doi:10.1016/j.anr.2020.09.004
16.
Kochhar A, Fischer SM, Kimberling WJ, Smith RJ. Branchio-oto-renal syndrome. Am J Med Genet A. 2007;143A(14):1671-1678. doi:10.1002/ajmg.a.31561
17.
Kokorelias KM, Gignac MAM, Naglie G, Cameron JI. Towards a universal model of family centered care: a scoping review. BMC Health Serv Res. 2019;19(1):564. doi:10.1186/s12913-019-4394-5
18.
Lee J. Neonatal family-centered care: evidence and practice models. Clin Exp Pediatr. 2024;67(4):171-177. doi:10.3345/cep.2023.00367
19.
Lemacks J, Fowles K, Mateus A, Thomas K. Insights from parents about caring for a child with birth defects. Int J Environ Res Public Health. 2013;10(8):3465-3482. doi:10.3390/ijerph10083465
20.
Miller JL, Baschat AA, Rosner M, et al. Neonatal survival after serial amnioinfusions for bilateral renal agenesis: the renal anhydramnios fetal therapy trial. JAMA. 2023;330(21):2096-2105. doi:10.1001/jama.2023.21153
21.
Pilon B, Craig AK, Lemmon ME, Goeller A; Newborn Brain Society Guidelines and Publications Committee. Supporting families in their child's journey with neonatal encephalopathy and therapeutic hypothermia. Semin Fetal Neonatal Med. 2021;26(5):101278. doi:10.1016/j.siny.2021.101278
22.
Ramezani T, Hadian Shirazi Z, Sabet Sarvestani R, Moattari M. Family-centered care in neonatal intensive care unit: a concept analysis. Int J Community Based Nurs Midwifery. 2014;2(4):268-278.
23.
Sheldon CR, Kim ED, Chandra P, et al. Two infants with bilateral renal agenesis who were bridged by chronic peritoneal dialysis to kidney transplantation. Pediatr Transplant. 2019;23(6):e13532. doi:10.1111/petr.13532
24.
Society for Maternal-Fetal Medicine (SMFM), Jelin A. Renal agenesis. Am J Obstet Gynecol. 2021;225(5):B28-B30. doi:10.1016/j.ajog.2021.06.048
25.
Son H, Oyesanya TO, Brandon D, Docherty SL. Challenges and coping between parents in shared decision-making for children with complex, life-threatening conditions: a qualitative content analysis. J Pediatr Nurs. 2023;73:e93-e99. doi:10.1016/j.pedn.2023.07.018
26.
Sugarman J, Anderson J, Baschat AA, et al. Ethical considerations concerning amnioinfusions for treating fetal bilateral renal agenesis. Obstet Gynecol. 2018;131(1):130-134. doi:10.1097/AOG.0000000000002416
27.
Thomas AN, McCullough LB, Chervenak FA, Placencia FX. Evidence-based, ethically justified counseling for fetal bilateral renal agenesis. J Perinat Med. 2017;45(5):585-594. doi:10.1515/jpm-2016-0367
28.
von der Hude K, Garten L. Psychosocial support within the context of perinatal palliative care: the "SORROWFUL" model. Children (Basel). 2022;10(1):38. doi:10.3390/children10010038
29.
Winterberg PD, Garro R. Long-term outcomes of kidney transplantation in children. Pediatr Clin North Am. 2019;66(1):269-280. doi:10.1016/j.pcl.2018.09.008
30.
Μεταλλινού Δ, Παπαχρήστου Ζ. Το κουτί αναμνήσεων στη νεογνική απώλεια. Ελευθώ. 2023;22(1):1. doi: 10.18332/eleutho/162605
31.
Παντελάκη Ν, Σαραντάκη Α, Δραγκιώτη Ε, Μεταλλινού Δ. Διαπολιτισμική προσέγγιση νεογνικού θανάτου στις ΜΕΝΝ. Ελευθώ. 2024;23(4):7. doi:10.18332/eleutho/195973
32.
Τρίκα Π, Μεταλλινού Δ, Καραμπάς Γ, Τίγκα Μ, Νάνου Χ. Ανακοίνωση δυσάρεστων ειδήσεων στη Μονάδα Εντατικής Νοσηλείας Νεογνών: μία αφηγηματική ανασκόπηση. Ελευθώ. 2025;24(1):3. doi:10.18332/eleutho/201473