Abstract
Objective
Describe nutrition type/route at the first oral feed (FOF) for infants with critical congenital heart disease (CCHD); identify supportive/limiting factors.
Study design
Retrospective cohort; adjusted regression estimated associations between parental/clinical factors and human milk or breastfeeding at the FOF.
Result
For 1355 infants across 15 sites, human milk was used in 78.5% of FOFs, with 34.5% breastfeeding. Human milk was associated with parent presence (OR: 5.32, p < 0.001) and with feeding/lactation consults (2.49, p < 0.001). Private insurance predicted human milk (1.87, p < 0.001) and breastfeeding (1.82, p < 0.001). Younger age (<2 days; 2.23, p < 0.001) and preoperative status (3.66, p < 0.001) were associated with breastfeeding.
Conclusion
This is the first description of human milk/breastfeeding at the FOF in CCHD. Parent presence and feeding/lactation support were potentially modifiable factors.
Subject terms: Epidemiology, Congenital heart defects
Introduction
Infants who are hospitalized for congenital heart disease (CCHD) frequently experience delayed oral feeding initiation due to medical and surgical interventions for critical illness, clinical comorbidities, poor arousal and state regulation, and parent-infant separation during the postnatal period [1, 2]. While early feeding exposure for infants with CHD is associated with reduced likelihood of a feeding tube requirement at hospital discharge [3, 4], persistent feeding difficulties with dependence on alternative feeding routes (e.g., feeding tube, intravenous nutrition) may contribute to longer hospital length of stay and higher healthcare utilization [5]. For parents, feeding is a core relational activity that supports bonding, parental role attainment, and confidence in caring for their medically fragile infant [6, 7]. Moreover, breastfeeding (BF) initiation, an intricate neurodevelopmental process that depends on reciprocal learning between infant and parent [8], is often disrupted, which further constraints opportunities for parent-infant synchrony during this critical developmental window.
Human milk and direct BF provide the optimal, biologically normative nutrition for all infants and are unequivocally recommended for hospitalized infants due to disease reduction and neurodevelopmental benefit [9, 10]. For infants with CCHD, human milk feeding has been associated with substantial reductions in necrotizing enterocolitis and hospital length of stay, while direct BF has been associated with 93% lower sepsis and fewer adverse gastrointestinal events [11–14]. Importantly, human milk and BF are strongly preferred by most parents, including those of infants with CCHD (>90% in one CCHD study) [15]. Early feeding experiences play a critical role in shaping long-term nutrition for hospitalized infants, including those with CCHD [16–21]. One study of nearly 2500 infants with single ventricle CHD found that any BF prior to the stage 1 palliative surgery was associated with a twofold higher likelihood of receiving human milk, both at discharge and at the time of the stage 2 palliation nearly 5 months later, while any preoperative bottle feeding with commercial formula predicted lower human milk use [22]. Similarly, a single-site study of newborns undergoing surgery found that human milk use during the first enteral feed was associated with a 44% higher proportion of human milk intake during hospitalization and greater likelihood of human milk at discharge [23].
The first oral feed (FOF), defined as the first occasion an infant receives nutrition orally, is strongly related to human milk and BF duration [18, 19, 24, 25]. For preterm infants, direct BF at the FOF has been associated with higher rates of human milk feeding and BF throughout hospitalization and at discharge [19, 24], and a 2021 Cochrane review concluded that avoiding bottle use during preterm oral feeding initiation may increase BF rates for at least 6 months post-discharge [25]. This evidence suggests that, for hospitalized infants, the FOF may support maternal-infant exposure to the life course benefits of human milk and BF. Little is known, however, about the FOF specifically for infants with CCHD. To address this knowledge gap, we aimed to describe the nutrition type (maternal or donor human milk, commercial formula) and route (BF, bottle feeding) at the FOF for infants with CCHD across 15 geographically and institutionally diverse sites, and to identify differences in nutrition type and route based on key parental and clinical factors.
Materials/subjects and methods
Study design and setting
This retrospective cohort study represents a secondary analysis of data originating from a multisite quality improvement (QI) initiative focused on increasing parental engagement during the FOF for infants with CCHD. The QI initiative was conducted in 15 pediatric cardiac centers participating in the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative and supported by Cardiac Networks United. The initiative was grounded in a QI framework that included development of a key driver diagram highlighting family-centered education, staff awareness, workflow integration, and access to feeding specialists as primary drivers of improved parent involvement during the FOF. Boston Children’s Hospital Institutional Review Board approved this study and deemed it exempt (IRB-P00047550).
Data collection
Data were abstracted retrospectively from electronic medical records using a standardized REDCap tool. A multidisciplinary team composed of physicians, nurses, feeding specialists, and QI experts created a comprehensive data dictionary before data collection. Abstractors were dedicated research assistants or the site principal investigator. All abstractors completed structured training and calibration to ensure consistent application of variable definitions and standardized data entry procedures. Data collection occurred from September 2022 through April 2025 and represented data collected throughout the QI project. Data were deidentified at the site level before being uploaded to the central REDCap database. A data analyst supporting the initiative conducted routine data quality checks throughout the project, including monthly review and generation of control charts to identify inconsistencies, missing data, or deviations from expected patterns. Sites were contacted for clarification or correction when data irregularities were identified.
Participants
Inclusion criteria were infants diagnosed with CCHD, defined as a structural cardiac diagnosis expected to require surgery during the first year of life, who were admitted to the cardiac intensive care unit (CICU). Infants were required to be younger than 3 months of age at the time of their FOF, and to experience the FOF during their index hospitalization. Infants were excluded if they did not have sufficient medical record documentation to characterize cardiac diagnosis or feeding details.
Variables
Exposure variables, hypothesized to impact nutrition type or route at the FOF based on clinical experience and previous literature, included [1] the presence of a parent at the FOF, defined as a primary caregiver [2], infant insurance type, defined as public (“US Public,” “US Medicaid,” or “US Medicare”) or private (“Private,” “Free Universal Health Care,” or “Self-pay/International”) [3], early infant age at the FOF, defined as <2 days old [4], the infant’s surgical status, defined as preoperative, postoperative, or non-surgical (includes catheter-based procedures), and [5] whether the infant had a feeding therapist or lactation consult before or during the FOF. Covariates for models were determined a priori and included insurance type, single ventricle cardiac physiology, infant age, and diagnosed or suspected genetic/chromosomal syndrome, as appropriate for the model. Preterm birth (<37 weeks) was considered as a covariate, but did not improve the models.
Statistical analysis
Descriptive statistics (e.g., n, %) and data visualization characterized the type and route of nutrition used at the FOF. To explore patterns by infant age, the cohort was divided into approximate quartiles, with quartile 1 (Q1) including infants with the FOF < 2 days old, quartile 2 (Q2) 2–3 days old, quartile 3 (Q3) 4–13 days old, and quartile 4 (Q4) ≥ 14 days old. We fit unadjusted and adjusted logistic regression models to estimate associations between the parental and clinical variables of interest and human milk or BF at the FOF. As missing data were minimal (3% missing single ventricle physiology; 1% surgical status; <1% age at FOF) with no clear patterns of missingness, we used complete cases for models. We assessed multicollinearity by calculating the variance inflation factor for each covariate. Statistical significance was set at p < 0.05, and analyses were completed in R version 4.5.0.
Results
Across 15 sites, 1355 infants had their FOF at a mean age of 10 days (Table 1), with a parent present for 73.4% of these feedings. Human milk (maternal or donor) was used in 78.5% of FOF events, and 34.5% of FOF events occurred via BF. Figure 1 illustrates the patterns of nutrition type and feeding route relative to the infant’s age. In this data visualization, human milk use appeared to be more frequent when a parent was present, a finding observed across all age quartiles. The lowest human milk prevalence (<50%) was observed among infants in the earliest FOF quartile (Q1) who did not have a parent present at the FOF. While BF and bottle feeding occurred with similar frequency for infants in Q1, the prevalence of BF at the FOF decreased over the first two postnatal weeks. Both human milk and BF occurred more frequently for infants with a feeding therapy or lactation consultation before or during the FOF.
Table 1.
Sample characteristics (N = 1355).
| n (%) or mean (SD) | |
|---|---|
| Sex | |
| Female | 562 (41.5%) |
| Male | 793 (58.5%) |
| Preterm | 184 (13.6%) |
| (Unknown) | 5 |
| Insurance type | |
| Private | 718 (58.9%) |
| Public | 500 (41.1%) |
| (Unknown) | 137 |
| Interpreter needed | 154 (11.4%) |
| (Unknown) | 7 |
| Parent primary language | |
| English | 1187 (88.0%) |
| Spanish | 112 (8.3%) |
| Another language | 50 (3.7%) |
| (Unknown) | 6 |
| Primary cardiac diagnosis | |
| Single Ventricle | 444 (33.8%) |
| Biventricular | 869 (66.2%) |
| (Unknown) | 42 |
| Major genetic syndrome | |
| Yes/Suspected | 331 (24.4%) |
| No/Unknown | 1024 (75.6%) |
| Age (days) at FOF | 10 (15) |
| Surgical status at FOF | |
| Preoperative | 892 (67.8%) |
| Postoperative | 364 (27.7%) |
| Othera | 60 (4.6%) |
| (Unknown) | 39 |
| Parent present at FOF | 878 (73.4%) |
| (Unknown) | 159 |
| Mother present at FOF | 838 (70.3%) |
| If mother present, gave FOF | 707 (90.5%) |
| Father present at FOF | 377 (42.2%) |
| If father present, gave FOF | 102 (30.7%) |
| FOF nutrition route | |
| Bottle | 854 (63.0%) |
| Breastfeeding | 468 (34.5%) |
| Other | 33 (2.4%) |
| FOF nutrition type | |
| Maternal human milk | 953 (70.3%) |
| Donor human milk | 111 (8.2%) |
| Commercial formula | 244 (18.0%) |
| Other | 47 (3.5%) |
| Feeding consult before/during the FOF | 963 (72.7%) |
| (Unknown) | 31 |
| Feeding therapist consult before/during the FOF | 642 (47.9%) |
| (Unknown) | 15 |
| Lactation consult before/during the FOF | 789 (60.6%) |
| (Unknown) | 53 |
FOF first oral feed.
a“Other” includes cases in which surgery is likely in a subsequent admission, or when surgery is not likely to be needed.
Fig. 1. Feeding patterns at the first oral feed by infant age and clinical factors (n = 1355).
a Percentage of nutrition types and routes at the first oral feed, by infant age. b Percentage of human milk at the first oral feed, by infant age and parent presence. c Percentage of human milk and breastfeeding at the first oral feed, by infant age and surgical status d Percentage of human milk and breastfeeding at the first oral feed, by infant age and feeding consult (feeding therapist or lactation) status.
Table 2 presents associations between key parental or clinical factors and human milk or BF at the FOF. In adjusted models, parent presence, private insurance, and a feeding/lactation consult were all associated with greater odds of human milk at the FOF, while private insurance, early age (<2 days) and preoperative or other/unknown surgical status was associated with higher likelihood of BF. Specifically, having a parent present was associated with 5.32 times greater odds of human milk use (95% CI: 3.86–7.35 times greater, p < 0.001). Infants who received a feeding or lactation consult were 2.49 times more likely to receive human milk at the FOF (1.81–3.43, p < 0.001). Infants with private insurance were 1.87 times more likely to receive human milk, (1.40–2.51, p < 0.001) and 1.82 times greater odds of BF at the FOF (1.40–2.36, p < 0.001), compared to infants with public insurance. Early age at the FOF was associated with 2.23 times higher BF likelihood (1.70–2.95, p < 0.001). Preoperative or other/unknown surgical status were associated with 3.66 and 3.16 times greater odds of BF, respectively (p < 0.001 for both).
Table 2.
Associations between clinical and parental factors and human milk or direct breastfeeding at the first oral feed for infants with critical congenital heart disease (n = 1355).
| Outcome: Human milk (maternal or donor) at the first oral feed | |||
|---|---|---|---|
| OR | 95% CI | p value | |
| Model 1: Parent presence | |||
| a. Parent present (Unadjusted, n = 1196) | 5.39 | (3.98–7.32) | <0.001 |
| b. Parent present (Adjusted, n = 1162)a | 5.32 | (3.86–7.35) | <0.001 |
| Model 2: Insurance type | |||
| a. Insurance type: Private (Unadjusted, n = 1218) | 1.81 | (1.37–2.39) | <0.001 |
| b. Insurance type: Private (Adjusted, n = 1178) | 1.87 | (1.40–2.51) | <0.001 |
| Model 3: Early oral feedingb | |||
| a. Early oral feeding (Unadjusted, n = 1355) | 0.77 | (0.57–1.05) | 0.098 |
| b. Early oral feeding (Adjusted, n = 1313) | 0.78 | (0.57–1.07) | 0.117 |
| Model 4: Surgical statusc | |||
| a. Surgical status (Unadjusted, n = 1355) | |||
| Preop | 1.35 | (1.00–1.79) | 0.045 |
| Other/Unknown | 0.92 | (0.56–1.55) | 0.754 |
| b. Surgical status (Adjusted, n = 1313) | |||
| Preop | 1.30 | (0.96–1.75) | 0.086 |
| Other/Unknown | 0.94 | (0.56–1.63) | 0.829 |
| Model 5: Feeding consult (therapist or lactation) before or during the first oral feed | |||
| a. Feeding consult occurred (Unadjusted, n = 1324) | 1.77 | (1.34–2.34) | <0.001 |
| b. Feeding consult occurred (Adjusted, n = 1285) | 2.49 | (1.81–3.43) | <0.001 |
| Outcome: Direct breastfeeding at the first oral feed | |||
|---|---|---|---|
| OR | 95% CI | p value | |
| Model 6: Insurance type | |||
| a. Insurance type: Private (Unadjusted, n = 1218) | 1.91 | (1.49–2.45) | <0.001 |
| b. Insurance type: Private (Adjusted, n = 1178) | 1.82 | (1.40–2.36) | <0.001 |
| Model 7: Early oral feeding | |||
| a. Early oral feeding (Unadjusted, n = 1355) | 2.39 | (1.83–3.11) | <0.001 |
| b. Early oral feeding (Adjusted, n = 1313) | 2.23 | (1.70–2.95) | <0.001 |
| Model 8: Surgical status | |||
| a. Surgical status (Unadjusted, n = 1355) | |||
| Preop | 3.19 | (2.37–4.34) | <0.001 |
| Other/Unknown | 3.60 | (2.22–5.83) | <0.001 |
| b. Surgical status (Adjusted, n = 1313) | |||
| Preop | 3.66 | (2.20–6.08) | <0.001 |
| Other/Unknown | 3.16 | (2.33–4.33) | <0.001 |
| Model 9: Feeding consult (therapist or lactation) before or during the first oral feed | |||
| a. Feeding consult occurred (Unadjusted, n = 1324) | 0.65 | (0.51–0.83) | <0.001 |
| b. Feeding consult occurred (Adjusted, n = 1285) | 0.99 | (0.75–1.31) | 0.940 |
Bold = significant at p < 0.05
aAll adjusted models were adjusted for insurance type (except models 2 and 6), single ventricle cardiac diagnosis, genetic/chromosomal syndrome, and infant age (except models 3 and 7).
bEarly oral feeding is defined as <2 days old.
cThe reference category for models 4 and 8 (surgical status) is postoperative.
Most infants (72.7%) received at least one feeding consult before or during the FOF. A total of 468 (35.5%) infants had consults from both a feeding therapist and lactation consultant, while 321 (24.2%) infants received a lactation consult only and 174 (12.9%) met with a feeding therapist only. In subgroup analysis (Table 3), the type of feeding consult was significantly associated with human milk at the FOF. Infants with a lactation consult only or both lactation and feeding therapist consults were approximately twice as likely to receive human milk at the FOF (2.21 and 2.03 greater odds, respectively; p < 0.001). In contrast, infants with only a feeding therapist consult were 47% less likely to receive human milk (95% CI: 23–63% lower odds, p < 0.001). Feeding consult type was not significantly associated with BF at the FOF.
Table 3.
Associations between type of feeding consult and human milk or direct breastfeeding at the first oral feed for infants with critical congenital heart disease.
| Outcome: Human milk (maternal or donor) at the first oral feed | |||
|---|---|---|---|
| OR | 95% CI | p value | |
| Model 1: Both feeding therapist and lactation consult | |||
| a. Unadjusted (n = 1363) | 1.31 | (0.99–1.75) | 0.059 |
| b. Adjusted (n = 1276) | 2.03 | (1.46–2.84) | <0.001 |
| Model 2: Feeding therapist consult only | |||
| a. Unadjusted (n = 1347) | 0.52 | (0.37–0.74) | <0.001 |
| b. Adjusted (n = 1305) | 0.53 | (0.37–0.77) | 0.001 |
| Model 3: Lactation consult only | |||
| a. Unadjusted (n = 1324) | 2.64 | (1.83–3.92) | <0.001 |
| b. Adjusted (n = 1285) | 2.21 | (1.51–3.30) | <0.001 |
| Outcome: Breastfeeding at the first oral feed | |||
| OR | 95% CI | p value | |
| Model 4: Both feeding therapist and lactation consult | |||
| a. Unadjusted (n = 1363) | 0.60 | (0.47–0.77) | <0.001 |
| b. Adjusted (n = 1276) | 0.89 | (0.67–1.18) | 0.430 |
| Model 5: Feeding therapist consult only | |||
| a. Unadjusted (n = 1347) | 0.84 | (0.59–1.18) | 0.321 |
| b. Adjusted (n = 1305) | 0.97 | (0.67–1.38) | 0.869 |
| Model 6: Lactation consult only | |||
| a. Unadjusted (n = 1324) | 1.24 | (0.95–1.61) | 0.107 |
| b. Adjusted (n = 1285) | 1.11 | (0.84–1.46) | 0.470 |
Bold = significant at p < 0.05
Adjusted models were adjusted for insurance type, single ventricle cardiac diagnosis, genetic/chromosomal syndrome, and infant age.
Discussion
In this large, multisite cohort we described, for the first time, the patterns and prevalence of human milk and BF at the FOF among infants with CCHD. Across 15 sites, fewer than 80% of infants received human milk at the FOF and only 35% were breastfed. While direct comparison to healthy infants is difficult due to a lack of differentiation between human milk feeding and direct BF in national and global reports, the overall human milk and BF rates in our cohort are lower than the 85.7% of US infants “ever breastfed” in 2022, with direct BF particularly low [26]. Evidence on FOF experiences for hospitalized infants is primarily limited to single-site studies of preterm infants [19–21, 24], with wide variation in reported FOF practices. Pineda et al. found that only 16.4% of infants who initiated enteral human milk feeding (n = 66) were breastfed at the FOF [19], while Casey et al. reported 75% BF at the FOF for infants whose parent intended to breastfeed (n = 69) [24]. Similar to our results, Suberi et al. found that 40% of very low birth weight infants (n = 255) received their FOF via BF, in a cohort that was not limited to infants whose parent intended to provide human milk or BF [20]. The only known previous study on first feeding experiences for newborns undergoing surgery, including infants with CCHD (n = 24), reported that 69.5% of infants received human milk for their first enteral feed; however, this study did not investigate the FOF [23]. Thus, our findings address a critical knowledge gap by establishing baseline data on the timing, type, and route of nutrition at the FOF for infants with CCHD, providing a foundation for future research and QI initiatives aimed at optimizing early feeding practices in this high-risk population.
Parent presence emerged as a strong predictor of human milk use at the FOF. Strikingly, fewer than half of the youngest infants (0 or 1 day old) without a parent present received human milk at their FOF. This finding highlights a critical window for intervention, particularly as early formula exposure is consistently associated with early cessation of human milk and BF in both hospitalized and healthy newborns [16, 17, 23]. Furthermore, in high-risk populations, human milk (particularly maternal human milk) is associated with lower rates of infection, necrotizing enterocolitis, and shorter hospital stays compared with formula, and is therefore considered the preferred enteral nutrition when available [10, 12, 13]. Accordingly, current practice recommendations increasingly frame human milk as the preferred enteral nutrition source for medically fragile infants, with formula reserved for situations in which maternal or donor milk is unavailable or contraindicated [9, 10, 27].
Beyond nutritional and clinical implications, early feeding is also a core relational experience. For medically fragile infants, the FOF may be one of the first opportunities for parents to participate in attuned caregiving. These early feeding moments situate the infant in the natural parent niche, a caregiving environment defined by closeness, attunement, and co-regulatory support. Parental presence, gentle physical contact, and responsive engagement during feeding support early co-regulation and help establish a sense of safety and connection, processes foundational for emerging attachment relationships [28]. When parents are absent at this early feeding moment, their ability to assume a confident caregiving role may be disrupted, particularly in the context of the stress and separation inherent to CICU hospitalization [7].
Given the clear association between parent presence and human milk use at the FOF, targeted strategies are needed to support families and strengthen early feeding practices. Potential strategies for practice improvement include ensuring donor human milk access as a bridge to maternal milk [29], enhancing clinician education about the potential long-term impact of the FOF [30–32], incorporating prenatal discussions about the FOF to document parent feeding preferences and plan for early colostrum and human milk use [32], and prioritizing parent involvement in the FOF [33]. Notably, donor human milk is widely accepted as standard of care in NICUs due to decades of evidence linking human milk to reduced risk of necrotizing enterocolitis [34], and 88% of level 3 and 4 US NICUs reported active donor human milk programs in 2020 [35]. In contrast, our cohort demonstrated low donor human milk use, with only 8.5% of infants in Q1 (<2 days) and 8.2% overall receiving donor milk at the FOF, highlighting an opportunity for practice change to improve access to human milk in the context of early parent-infant separation. While there is little evidence specifically focused on donor human milk for CHD populations, the American Academy of Pediatrics recommends donor human milk for high-risk infants [36], and our results highlight an opportunity for institutions to improve processes for donor milk access, consent, and prioritization.
Breastfeeding at the FOF was uncommon in our cohort and declined over the first 2 postnatal weeks. Early infant age and, relatedly, preoperative status were both associated with a higher likelihood of BF. These findings suggest a need for early strategies to preserve later BF opportunity, particularly since there is a finite developmental window for BF establishment [32]. Evidence-based approaches include enhanced lactation support, as specialized staff training and lactation services have been associated with higher BF establishment and duration for NICU populations [30, 37, 38]. Early and frequent skin-to-skin (STS) care increases BF initiation [39, 40] and success and is safe and feasible for infants with CCHD even in the immediate postnatal period [41–44]. Non-nutritive latching when the infant is not able to take feeds by mouth has been shown to increase BF for preterm infants [45]. Additionally, in a cohort of newborns undergoing CCHD surgery, increasing frequency of oral care with human milk during the first 7 postnatal days was associated with substantially greater odds of BF at discharge [15]. Future areas for investigation include development of clinical guidelines to support BF at the FOF postoperatively, when there may be increased concern for aspiration or a heightened focus on volume intake [32].
While infants who received some form of feeding consult (feeding therapist and/or lactation) before or during the FOF had higher rates of human milk use, this result appeared to be driven largely by lactation consultants, with feeding therapist consults negatively associated with human milk in the absence of lactation involvement. Notably, neither feeding therapist consults nor lactation consults were linked to higher BF rates. Several factors may explain these patterns. Parents who did not intend to provide human milk or BF may have been more likely to receive feeding therapy without lactation support; however, in this high-risk population, donor milk use may still be warranted. Additionally, there is often limited BF-specific training among feeding therapists. As Mahurin-Smith and Genna note, few speech-language pathologists receive BF training and may have limited understanding of the physiology of BF compared to bottle-feeding, constraining their assessments and recommendations to bottle-based approaches [46]. Importantly, BF and human milk content is currently absent from the American Speech-Language-Hearing Association standards for speech-language-pathologist curriculum, representing an actionable gap [47, 48]. Targeted, BF-specific education for feeding therapists may be important in enhancing their ability to provide lactation-supportive care in the context of CCHD.
Finally, our finding that public insurance was associated with lower rates of human milk use and BF at the FOF suggests that social drivers of health influence lactation outcomes. This pattern is consistent with evidence from both term [49] and preterm [50] populations and aligns with studies in CCHD, where insurance type has been shown to be a strong predictor of human milk use and BF at hospital discharge in a national cohort of infants with single ventricle CHD [22]. Because early feeding experiences help shape parental role confidence, bonding, and the development of secure attachment, disparities in parent presence and human milk access at the FOF may compound existing social and structural inequities. Ensuring that families facing socioeconomic barriers receive proactive support may therefore be essential not only for improving nutrition outcomes but also for fostering equitable early relational experiences.
This study has several limitations. Because the data were collected as part of a QI initiative, parent presence at the FOF may have varied over time. Some sites reported difficulty in tracking the FOF, which may have led to underreporting of infants without a feeding consult before or during the FOF. Reporting may have been impacted by differences across sites in FOF electronic health record documentation practices. The retrospective design precludes causal inference, and available covariates were limited to those collected as part of the QI project. For example, we lacked information about parental characteristics such as maternal intention to provide human milk or BF. While the multi-site design is a strength, sites participating in the QI project may be different than non-participating sites; thus, our results may not be fully generalizable. Future research is needed to identify institutional and cultural barriers to human milk and BF at the FOF, and to investigate the potential impact of the FOF on long-term nutrition outcomes for children with CCHD.
In conclusion, this large, multisite study provides the first description of the prevalence and patterns of human milk and BF at the FOF among infants with CCHD, identifying substantial gaps compared to the general US population. Parent presence and lactation support emerged as potentially modifiable factors associated with human milk at the FOF, and early oral feeding practices in the absence of a parent may be a particularly critical target for focused intervention. Early/preoperative oral feeding was associated with increased BF, suggesting a need for intentional strategies to support later BF opportunity. Infant insurance type was associated with both human milk and BF, reinforcing the impact of social drivers of health on lactation outcomes for hospitalized infants. Recommendations for clinical practice include improving institutional donor human milk access, offering specialized clinician education, prioritizing parent presence at the FOF, and implementing evidence-based practices that facilitate direct BF (e.g., skin-to-skin care, non-nutritive latching, oral immune therapy with human milk). Taken together, the findings from this study highlight an opportunity to optimize infant nutrition and strengthen the parent-infant connection during a period of heightened vulnerability, through intentional strategies to increase human milk and BF at the FOF for infants with CCHD.
Acknowledgements
Thank you to the site participants who contributed data for this project, and to the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), the CNOC QI Committee, and Cardiac Networks United for supporting this effort.
Author contributions
KME: Conceptualization, Formal analysis, Investigation, Methodology, Project administration, Supervision, Visualization, Writing: original draft, Writing: Review and editing; CC: Conceptualization, Investigation, Data curation, Writing: original draft, Writing: Review and editing; NLS: Conceptualization, Investigation; Data curation, Resources; Writing: Review and editing; KMM: Data curation, Writing: Review and editing; AK: Project administration, Data curation, Writing: Review and editing; MM: Project administration, Data curation, Writing: Review and editing; CP: Data curation, Writing: Review and editing; KAN: Conceptualization, Investigation, Data curation, Writing: original draft, Writing: Review and editing; SCB: Conceptualization, Formal analysis, Investigation, Methodology, Project administration, Supervision, Writing: original draft, Writing: Review and editing.
Funding
KME was supported by the National Institutes of Health’s National Center for Advancing Translational Sciences, grants K12TR004373 and 1UM1TR004405-01A1. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health’s National Center for Advancing Translational Sciences.
Data availability
Due to patient privacy regulations and institutional data-use restrictions, the data for this study cannot be made publicly available and cannot be shared.
Competing interests
The authors declare no competing interests.
Ethics approval and consent to participate
The Boston Children’s Hospital Institutional Review Board approved this study (IRB-P00047550) and deemed it exempt, with waivers of consent approved. The authors assert that all procedures contributing to this work comply with the ethical principles outlined in the Declaration of Helsinki.
Footnotes
Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
References
- 1.Butler SC, Sadhwani A, Stopp C, Singer J, Wypij D, Dunbar-Masterson C, et al. Neurodevelopmental assessment of infants with congenital heart disease in the early postoperative period. Congenit Heart Dis. 2019;14:236–45. [DOI] [PubMed] [Google Scholar]
- 2.Gakenheimer-Smith L, Glotzbach K, Ou Z, Presson AP, Puchalski M, Jones C, et al. The impact of neurobehavior on feeding outcomes in neonates with congenital heart disease. J Pediatr. 2019;214:71–78.e2. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Dabbagh A, Miller S, McCulloch M, Rosenthal G, Conaway M, White S. Preoperative oral feeding in infants with congenital heart disease within the first month of life is associated with a higher likelihood of freedom from tube feeding at time of postoperative discharge. Pediatr Cardiol [Internet]. 2025 [cited 2025 Aug 15]; Available from: https://link.springer.com/10.1007/s00246-024-03750-z. [DOI] [PMC free article] [PubMed]
- 4.Elgersma KM, Trebilcock AL, Whipple MO, Tanner LR, Pilditch SJ, Shah KM, et al. Risk factors for tube feeding at discharge in infants undergoing neonatal surgery for congenital heart disease: a systematic review. Pediatr Cardiol. 2022;44:769–94. [DOI] [PubMed] [Google Scholar]
- 5.Mohiuddin TA, Raol N, Tey CS, Horný M, Zhang C, Sharp WG, et al. Quantifying the healthcare burden of pediatric feeding disorder after congenital heart surgery. J Pediatr. 2023;261:113593. [DOI] [PubMed] [Google Scholar]
- 6.Elgersma KM, McKechnie AC, Sommerness SA, Tanner LR, Swanson NM. Wayfinding through the “ocean of the great unknown”: how lactating parents establish a direct breastfeeding relationship with an infant with critical CHD. Cardiol Young-. 2022;33:2000–11. [DOI] [PubMed] [Google Scholar]
- 7.Lisanti AJ, Allen LR, Kelly L, Medoff-Cooper B. Maternal stress and anxiety in the pediatric cardiac intensive care unit. Am J Crit Care. 2017;26:118–25. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Flacking R, Tandberg BS, Niela-Vilén H, Jónsdóttir RB, Jonas W, Ewald U, et al. Positive breastfeeding experiences and facilitators in mothers of preterm and low birthweight infants: a meta-ethnographic review. Int Breastfeed J. 2021;16:88. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Meek JY, Noble L. Section on breastfeeding. policy statement: breastfeeding and the use of human milk. Pediatrics. 2022;150:e2022057988. [DOI] [PubMed] [Google Scholar]
- 10.World Health Organization, United Nations Children’s Fund (UNICEF). Protecting, promoting and supporting breastfeeding: The baby-friendly hospital initiative for small, sick and preterm newborns [Internet]. Geneva: World Health Organization; 2020 [cited 2021 Oct 11]. Available from: https://apps.who.int/iris/handle/10665/333686
- 11.Davis JA, Baumgartel K, Baust T, Conley YP, Morowitz MJ, Ren D, et al. Neonatal diet type and associations with adverse feeding outcomes in neonates with critical congenital heart defects. J Perinat Neonatal Nurs. 2024;38:54–64. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Elgersma KM, Wolfson J, Fulkerson JA, Georgieff MK, Looman WS, Spatz DL, et al. Human milk feeding and direct breastfeeding improve outcomes for infants with single ventricle congenital heart disease: propensity score matched analysis of the NPC-QIC registry. J Am Heart Assoc. 2023;12:e030756. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Cognata A, Kataria-Hale J, Griffiths P, Maskatia S, Rios D, O’Donnell A, et al. Human milk use in the preoperative period is associated with a lower risk for necrotizing enterocolitis in neonates with complex congenital heart disease. J Pediatr. 2019;215:11–16.e2. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Elgersma KM, Engel ML, Ramel SE, Davis JA, McKechnie AC, Pfister KM. Human milk, breastfeeding, and early neurodevelopmental outcomes for infants with critical CHD. Cardiol Young-. 2024;34:1–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Elgersma KM, Slater NL, Watkins K, Tanner LR, Swanson NM, Ramel SE. Oral care with human milk is associated with increased human milk feeding and breastfeeding for newborns with critical congenital heart disease. J Perinatol. 2026; 1–9. 10.1038/s41372-026-02698-7. [DOI] [PMC free article] [PubMed]
- 16.McCoy MB, Heggie P. In-hospital formula feeding and breastfeeding duration. Pediatrics. 2020;146:e20192946. [DOI] [PubMed] [Google Scholar]
- 17.Mannel R, Peck JD. Outcomes associated with type of milk supplementation among late preterm infants. J Obstet Gynecol Neonatal Nurs. 2018;47:571–82. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Pinchevski-Kadir S, Shust-Barequet S, Zajicek M, Leibovich M, Strauss T, Leibovitch L, et al. Direct feeding at the breast is associated with breast milk feeding duration among preterm infants. Nutrients. 2017;9:1202. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Pineda R. Direct breast-feeding in the neonatal intensive care unit: is it important?. J Perinatol. 2011;31:540–5. [DOI] [PubMed] [Google Scholar]
- 20.Suberi M, Morag I, Strauss T, Geva R. Feeding imprinting: the extreme test case of premature infants born with very low birth weight. Child Dev. 2018;89:1553–66. [DOI] [PubMed] [Google Scholar]
- 21.Briere CE, McGrath JM, Cong X, Brownell E, Cusson R. Direct-breastfeeding premature infants in the neonatal intensive care unit. J Hum Lact. 2015;31:386–92. [DOI] [PubMed] [Google Scholar]
- 22.Elgersma KM, Wolfson J, Fulkerson JA, Georgieff MK, Looman WS, Spatz DL, et al. Predictors of human milk feeding and direct breastfeeding for infants with single ventricle congenital heart disease: machine learning analysis of the National Pediatric Cardiology Quality Improvement Collaborative registry. J Pediatr. 2023;261:1–12. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.Davis JA, Glasser M, Spatz DL, Scott P, Demirci JR. First feed type is associated with birth/lactating parent’s own milk use during NICU stay among infants who require surgery. Adv Neonatal Care. 2022;22:578–88. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Casey L, Fucile S, Dow KE. Determinants of successful direct breastfeeding at hospital discharge in high-risk premature infants. Breastfeed Med. 2018;13:346–51. [DOI] [PubMed] [Google Scholar]
- 25.Allen E, Keir A, Collins CT, Gillis J, Suganuma H. Avoidance of bottles during the establishment of breastfeeds in preterm infants. Cochrane Database Syst Rev. 2021;10:CD005252. [DOI] [PMC free article] [PubMed]
- 26.CDC. Breastfeeding Data. 2025 [cited 2025 Dec 11]. NIS-Child Data Results. Available from: https://www.cdc.gov/breastfeeding-data/survey/results.html
- 27.Mills KI, Kim JH, Fogg K, Goldshtrom N, Graham EM, Kataria-Hale J, et al. Nutritional considerations for the neonate with congenital heart disease. Pediatrics. 2022;150:e2022056415G. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Linde K, Lehnig F, Nagl M, Kersting A. The association between breastfeeding and attachment: a systematic review. Midwifery. 2020;81:102592. [DOI] [PubMed] [Google Scholar]
- 29.Corallo J, Bieda A, Garland M, Dowling D, Timoney P, Bateman DA. The impact of a Donor Human Milk Program on the provision of mothers’ own milk at discharge in very low birth weight infants. J Perinatol. 2022;42:1473–9. [DOI] [PubMed] [Google Scholar]
- 30.Spatz DL. Beyond BFHI: The Spatz 10-Step and breastfeeding resource nurse model to improve human milk and breastfeeding outcomes. J Perinat Neonatal Nurs. 2018;32:164–74. [DOI] [PubMed] [Google Scholar]
- 31.Gauntt J, Tucker A, Dolan K, Gajarski R, Krawczeski CD. Increasing the percentage of neonates consuming human milk in a pediatric cardiothoracic intensive care unit: a quality improvement initiative. J Pediatr. 2023;258:113441. [DOI] [PubMed] [Google Scholar]
- 32.Elgersma KM, Davis JA, Mohan-ONeill S, Overpeck SR, Desai H, Gauntt J, et al. Breastfeeding infants with CHD: an evidence summary and recommendations from the Cardiac Newborn Neuroprotective Network, a special interest group of the Cardiac Neurodevelopmental Outcome Collaborative. Cardiol Young-. 2025;35:2053–66. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Swanson NM, Elgersma KM, McKechnie AC, McPherson PL, Bergeron MJ, Sommerness SA, et al. Encourage, Assess, Transition (EAT): a quality improvement project implementing a direct breastfeeding protocol for preterm hospitalized infants. Adv Neonatal Care. 2023;23:107–19. [DOI] [PubMed] [Google Scholar]
- 34.Quigley M, Embleton ND, McGuire W. Formula versus donor breast milk for feeding preterm or low birth weight infants. Cochrane Neonatal Group, editor. Cochrane Database Syst Rev [Internet]. 2019 [cited 2021 Mar 22]; Available from: http://doi.wiley.com/10.1002/14651858.CD002971.pub5. [DOI] [PMC free article] [PubMed]
- 35.Parker MG, Burnham LA, Kerr S, Belfort MB, Perrin M, Corwin M, et al. Prevalence and predictors of donor milk programs among U.S. advanced neonatal care facilities. J Perinatol. 2020;40:672–80. [DOI] [PubMed] [Google Scholar]
- 36.Daniels S, De Ferranti S, Golden NH, Kim JH, Magge SN, Schwarzenberg SJ, et al. Donor human milk for the high-risk infant: Preparation, safety, and usage options in the United States. Pediatrics. 2017;139:e20163440. [DOI] [PubMed] [Google Scholar]
- 37.Gharib S, Fletcher M, Tucker R, Vohr B, Lechner BE. Effect of dedicated lactation support services on breastfeeding outcomes in extremely-low-birth-weight neonates. J Hum Lact. 2018;34:728–36. [DOI] [PubMed]
- 38.Hallowell SG, Rogowski JA, Spatz DL, Hanlon AL, Kenny M, Lake ET. Factors associated with infant feeding of human milk at discharge from neonatal intensive care: cross-sectional analysis of nurse survey and infant outcomes data. Int J Nurs Stud. 2016;53:190–203. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.Karimi FZ, Miri HH, Khadivzadeh T, Maleki-Saghooni N. The effect of mother-infant skin-to-skin contact immediately after birth on exclusive breastfeeding: a systematic review and meta-analysis. J Turk Ger Gynecol Assoc. 2020;21:46–56. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 40.Song JT, Kinshella MLW, Kawaza K, Goldfarb DM. Neonatal intensive care unit interventions to improve breastfeeding rates at discharge among preterm and low birth weight infants: a systematic review and meta-analysis. Breastfeed Med. 2023;18:97–106. [DOI] [PubMed] [Google Scholar]
- 41.Lisanti AJ, Demianczyk AC, Costarino A, Vogiatzi MG, Hoffman R, Quinn R, et al. Skin-to-skin care is a safe and effective comfort measure for infants before and after neonatal cardiac surgery. Pediatr Crit Care Med. 2020;21:e834–41. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 42.Harrison TM, Brown R. Autonomic nervous system function after a skin-to-skin contact intervention in infants with congenital heart disease. J Cardiovasc Nurs. 2017;32:E1–13. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 43.Gelehrter S, Blonsky S, Kataria-Hale J, Thomas I, Strohacker C, Laventhal N. Process improvement for family-centered congenital heart disease deliveries. Hosp Pediatr. 2025;15:529–36. [DOI] [PubMed] [Google Scholar]
- 44.Ball MK, Seabrook RB, Corbitt R, Stiver C, Nardell K, Medoro AK, et al. Safety and feasibility of skin-to-skin contact in the delivery room for high-risk cardiac neonates. Pediatr Cardiol. 2023;44:1023–31. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 45.Fucile S, Wener E, Dow K. Enhancing breastfeeding establishment in preterm infants: a randomized clinical trial of two non-nutritive sucking approaches. Early Hum Dev. 2021;156:105347. [DOI] [PubMed] [Google Scholar]
- 46.Mahurin-Smith J, Genna CW. Assessing the breastfeeding dyad: a guide for speech-language pathologists. Perspect ASHA SIGs. 2019;4:502–6. [Google Scholar]
- 47.Mahurin-Smith J. Changes in speech-language pathology students’ attitudes toward breastfeeding during a pediatric dysphagia course. J Hum Lact. 2018;34:721–7. [DOI] [PubMed]
- 48.Hookway L, Brown A. Barriers to optimal breastfeeding of medically complex children in the UK paediatric setting: a mixed methods survey of healthcare professionals. J Hum Nutr Diet. 2023;36:1857–73. [DOI] [PubMed] [Google Scholar]
- 49.Diaz LE, Yee LM, Feinglass J. Rates of breastfeeding initiation and duration in the United States: data insights from the 2016–2019 Pregnancy Risk Assessment Monitoring System. Front Public Health. 2023;11:1256432. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 50.Patel AL, Johnson TJ, Meier PP. Racial and socioeconomic disparities in breast milk feedings in US neonatal intensive care units. Pediatr Res. 2021;89:344–52. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Due to patient privacy regulations and institutional data-use restrictions, the data for this study cannot be made publicly available and cannot be shared.

