Mothers Report Gaps in Prenatal Counseling and Neonatal Realities

Bridging the Gap Between Prenatal Counseling and Neonatal Realities

As global child mortality from communicable diseases declines, congenital anomalies represent an increasing proportion of pediatric deaths and long-term morbidity [1, 2]. The reported birth prevalence of structural issues, such as congenital heart defects, has risen to approximately 9.4 per 1,000 live births, driven largely by improved diagnostic detection [3]. While prenatal counseling is a standard clinical intervention intended to reduce parental anxiety and facilitate complex decision-making, its effectiveness in preparing families for the specific challenges of the neonatal intensive care unit is not well-established [4]. Standardized antenatal care programs often struggle to provide consistent outcomes across diverse patient populations, particularly when communicating about lethal or complex anomalies [5]. To address this gap, researchers recently evaluated how well the information provided during these high-stakes consultations aligns with the lived experiences of mothers following delivery, offering insights into how clinicians can better prepare families for neonatal intensive care.

Quantifying the Alignment of Antenatal Expectations

The researchers conducted a questionnaire-based study at Hôpital Femme-Mère-Enfant in Lyon, France, focusing on mothers whose infants required specialized care in a tertiary neonatal intensive care unit. To meet the inclusion criteria, participants must have attended a prenatal diagnosis consultation and delivered a child requiring neonatal intensive care between January 2020 and December 2022. Out of 106 eligible mothers identified during this period, 64 (60 percent) responded to the questionnaire. The primary aim was to assess how mothers perceived the consistency of information retained from antenatal consultations relative to their actual experience during their neonate's hospitalization. As secondary objectives, the authors evaluated the quality of information delivered regarding fetal status, clinical management, and prognosis (the predicted clinical course and long-term outlook for the infant). To analyze these perceptions, the researchers defined their primary outcome measure, or dependent variable, as the perceived consistency of information provided during prenatal consultations compared with the mothers' lived experiences of hospitalization. The team utilized descriptive statistical analysis, summarizing quantitative variables as medians and qualitative variables (categorical data such as specific survey responses) as counts and percentages. By focusing on a population that had undergone formal prenatal diagnosis consultations, the study aimed to pinpoint exactly where the transition from fetal diagnosis to neonatal intensive care fails to provide a clear clinical roadmap for the family.

Identifying Disparities in Multidisciplinary Communication

The researchers evaluated how well prenatal counseling prepared families for the neonatal intensive care unit by identifying factors associated with perceived inconsistencies between retained information and the actual clinical experience. Among the 63 mothers who provided data on this specific metric, 68 percent (43 of 63) reported that the information received during antenatal consultations was mostly or fully consistent with their experience of their neonate's hospitalization. Conversely, 32 percent (20 mothers) reported disparities between the information they retained from their prenatal visits and the reality of their child's medical course. For this subset of 20 mothers who identified significant disparities, the study pinpointed specific communication failures within the healthcare team. Within this group, 35 percent (7 of 20) reported inconsistencies with information provided by other specialists, suggesting a lack of alignment between different departments such as obstetrics, maternal-fetal medicine, and neonatology. Furthermore, 25 percent (5 of 20) of these mothers reported not receiving information on their newborn's condition or prognosis. These findings underscore the clinical challenge of maintaining a unified message during high-risk pregnancies that require multidisciplinary care. When multiple specialists are involved, the risk of conflicting information increases, which can severely complicate a mother's understanding of her infant's status. The data reveal that nearly one-third of mothers may enter the neonatal intensive care unit with expectations that do not align with clinical reality, highlighting an urgent need for improved interdepartmental coordination.

Clinical Implications for Prognostic Counseling

The study concludes that there is a critical need to improve the consistency and clarity of information provided during antenatal consultations, particularly when care is delivered in a multidisciplinary context. Because high-risk pregnancies often involve a diverse team of specialists, the risk of discordant messaging is high. The researchers emphasize that clinicians must prioritize a unified communication strategy to prevent the disparities reported by nearly a third of the study participants. Furthermore, the findings highlight a specific need to better convey prognostic uncertainties, acknowledging the inherent difficulty in predicting the exact clinical course and long-term developmental outcomes for a neonate with complex medical conditions. For the practicing physician, this suggests that explicitly discussing the limits of medical predictability may be just as vital as providing the known clinical facts. The authors acknowledge certain methodological limitations, noting that the retrospective, questionnaire-based design involving 64 mothers may be subject to recall bias (a systematic error that occurs when participants do not remember past events accurately, often influenced by the emotional weight of a traumatic experience). To mitigate this limitation, the researchers suggest that further prospective studies are required to collect data in real time as the clinical situation unfolds. Transitioning to a prospective design, which follows patients from the initial prenatal diagnosis through the postpartum period, would provide more precise data to help refine how multidisciplinary teams coordinate their messaging and deliver difficult prognostic information to families.

References

1. Roth GA, Abate D, Abate KH, et al. Global, regional, and national age-sex-specific mortality for 282 causes of death in 195 countries and territories, 1980–2017: a systematic analysis for the Global Burden of Disease Study 2017. The Lancet. 2018. doi:10.1016/s0140-6736(18)32203-7

2. Glinianaia SV, Morris JK, Best K, et al. Long-term survival of children born with congenital anomalies: A systematic review and meta-analysis of population-based studies. PLoS Medicine. 2020. doi:10.1371/journal.pmed.1003356

3. Liu Y, Chen S, Zühlke L, et al. Global birth prevalence of congenital heart defects 1970–2017: updated systematic review and meta-analysis of 260 studies. International Journal of Epidemiology. 2019. doi:10.1093/ije/dyz009

4. Marokakis S, Kasparian NA, Kennedy SE. Prenatal counselling for congenital anomalies: a systematic review.. Prenatal diagnosis. 2016. doi:10.1002/pd.4836

5. Hollowell J, Oakley L, Kurinczuk JJ, Brocklehurst P, Gray R. The effectiveness of antenatal care programmes to reduce infant mortality and preterm birth in socially disadvantaged and vulnerable women in high-income countries: a systematic review. BMC Pregnancy and Childbirth. 2011. doi:10.1186/1471-2393-11-13