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OBJECTIVE: To examine the relations of individual and cumulative social risk factors to hospitalization outcomes and adherence to outpatient cardiology appointments within the first 2 years of life for congenital heart disease survivors. STUDY DESIGN: Data were extracted for 219 patients who underwent infant cardiac surgery with cardiopulmonary bypass. Cumulative social risk was dichotomized into high social risk (≥2 risk factors; n = 103) versus low social risk (≤1 risk factor; n = 116). The risk of morbidity by procedure was assigned from 1 to 5 (Society of Thoracic Surgeons and European Association for Cardio-Thoracic Surgery Morbidity Scores and Categories). Two-way ANOVAs examined the effects of social risk and morbidity risk on length of first surgical hospitalization, number of readmissions and readmission days, subsequent cardiac surgical interventions, and adherence to outpatient cardiology appointments. RESULTS: An interaction between social risk and morbidity risk was identified for number of readmission days, F(4, 209) = 3.07, P = .02, η2 = .06. Pairwise comparisons demonstrated that, among those patients with the lowest risk of morbidity by procedure (morbidity scores of 1 and 2), patients at high social risk had more readmission days than patients at low social risk (morbidity score 1: 16.63 ± 34.41 days vs 3.02 ± 7.13 days; morbidity score 2: 27.68 ± 52.11 days vs 2.20 ± 4.43 days). High social risk also predicted significantly worse adherence to cardiology appointments. CONCLUSIONS: Cumulative social risk impacts readmission days for patients with congenital heart disease with a low risk of morbidity by procedure. Social risk assessment can identify families who may benefit from social/behavioral interventions to optimize discharge readiness, congenital heart disease home management, and long-term outcomes.

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OBJECTIVE: To evaluate clinical outcome of patients with Ellis-van Creveld syndrome (EVC) in whom congenital heart disease (CHD) repair was delayed intentionally to reduce the risk of postoperative respiratory morbidity and mortality. STUDY DESIGN: This retrospective review of 51 EVC c.1886+5G>T homozygotes born between 2005 and 2014 focused on 18 subjects who underwent surgery for CHD, subdivided into early (mean, 1.3 months) vs delayed (mean, 50.1 months) repair. RESULTS: Growth trajectories differed between control subjects and patients with EVC, and CHD was associated with slower weight gain. Relative to controls, infants with EVC had a 40%-75% higher respiratory rates (independent of CHD) accompanied by signs of compensated respiratory acidosis. Blood gases and respiratory rates approached normal values by age 4 years. Hemodynamically significant CHD was present in 23 children, 18 (78%) of whom underwent surgical repair. Surgery was performed at 1.3 ± 1.3 months for children born between 2005 and 2009 (n = 9) and 50.1 ± 40.2 months (P = .009) for children born between 2010 and 2014 (n = 9). The latter had shorter postoperative mechanical ventilation (1.1 ± 2.4 days vs 49.6 ± 57.1 days; P = .075), shorter intensive care duration of stay (16 ± 24 days vs 48.6 ± 44.2 days; P = .155), and no postoperative tracheostomies (vs 60%; P = .028) or deaths (vs 44%; P = .082). CONCLUSION: Among children with EVC and possibly other short-rib thoracic dysplasias, delayed surgical repair of CHD reduces postoperative morbidity and improves survival. Respiratory rate serves as a simple indicator for optimal timing of surgical repair.

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OBJECTIVES: To assess variation in feeding practice at hospital discharge after the Norwood procedure, factors associated with tube feeding, and associations among site, feeding mode, and growth before stage II. STUDY DESIGN: From May 2005 to July 2008, 555 subjects from 15 centers were enrolled in the Pediatric Heart Network Single Ventricle Reconstruction Trial; 432 survivors with feeding data at hospital discharge after the Norwood procedure were analyzed. RESULTS: Demographic and clinical variables were compared among 4 feeding modes: oral only (n = 140), oral/tube (n = 195), nasogastric tube (N-tube) only (n = 40), and gastrostomy tube (G-tube) only (n = 57). There was significant variation in feeding mode among sites (oral only 0%-81% and G-tube only 0%-56%, P < .01). After adjusting for site, multivariable modeling showed G-tube feeding at discharge was associated with longer hospitalization, and N-tube feeding was associated with greater number of discharge medications (R(2) = 0.65, P < .01). After adjusting for site, mean pre-stage II weight-for-age z-score was significantly higher in the oral-only group (-1.4) vs the N-tube-only (-2.2) and G-tube-only (-2.1) groups (P = .04 and .02, respectively). CONCLUSIONS: Feeding mode at hospital discharge after the Norwood procedure varied among sites. Prolonged hospitalization and greater number of medications at the time of discharge were associated with tube feeding. Infants exclusively fed orally had a higher weight-for-age z score pre-stage II than those fed exclusively by tube. Exploring strategies to prevent morbidities and promote oral feeding in this highest risk population is warranted.

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