Emotional reactivity in infants with congenital heart defects: findings from a large case-cohort study in Norway

AIM: Advances in medical treatment in recent years have led to dramatically improved survival rates of children with severe congenital heart defects (CHD). However, very little is known about the psychological consequences for these children, particularly during and after the early period of invasive treatment. In this study, we investigated the extent to which the severity of the CHD affects the child's emotional reactivity at 6 months of age. METHOD: We linked prospective data from the Norwegian Mother and Child Cohort Study, conducted by the Norwegian Institute of Public Health with a nationwide medical CHD registry and identified 212 infants with CHD in a cohort of 61 299 infants. Mothers reported on their child's emotional reactivity at age 6 months by means of a standardized questionnaire. RESULTS: Infants with severe to moderate CHD had 60% higher odds for severe emotional reactivity (cut-off at the 85 percentile) compared with healthy infants, after controlling for important maternal and child confounders. CONCLUSION: Our study is the first to show elevated emotional reactivity in children with moderate to severe CHD, suggesting a need for special parental attention to soothe their distress. Follow-up studies will show whether this emotional reactivity is transient or an early marker of continuing emotional or behavioural problems

Modelling Survival and Mortality Risk to 15 Years of Age for a National Cohort of Children with Serious Congenital Heart Defects Diagnosed in Infancy

Congenital heart defects (CHDs) are a significant cause of death in infancy. Although contemporary management ensures that 80% of affected children reach adulthood, post-infant mortality and factors associated with death during childhood are not well-characterised. Using data from a UK-wide multicentre birth cohort of children with serious CHDs, we observed survival and investigated independent predictors of mortality up to age 15 years. Methods Data were extracted retrospectively from hospital records and death certificates of 3,897 children (57% boys) in a prospectively identified cohort, born 1992–1995 with CHDs requiring intervention or resulting in death before age one year. A discrete-time survival model accounted for time-varying predictors; hazards ratios were estimated for mortality. Incomplete data were addressed through multilevel multiple imputation. Findings By age 15 years, 932 children had died; 144 died without any procedure. Survival to one year was 79.8% (95% confidence intervals [CI] 78.5, 81.1%) and to 15 years was 71.7% (63.9, 73.4%), with variation by cardiac diagnosis. Importantly, 20% of cohort deaths occurred after age one year. Models using imputed data (including all children from birth) demonstrated higher mortality risk as independently associated with cardiac diagnosis, female sex, preterm birth, having additional cardiac defects or non-cardiac malformations. In models excluding children who had no procedure, additional predictors of higher mortality were younger age at first procedure, lower weight or height, longer cardiopulmonary bypass or circulatory arrest duration, and peri-procedural complications; non-cardiac malformations were no longer significant. Interpretation We confirm the high mortality risk associated with CHDs in the first year of life and demonstrate an important persisting risk of death throughout childhood. Late mortality may be underestimated by procedure-based audit focusing on shorter-term surgical outcomes. National monitoring systems should emphasise the importance of routinely capturing longer-term survival and exploring the mechanismsThis work was supported by a British Heart Foundation project grant (reference PG/02/065/13934). RLK was awarded an MRC Special Training Fellowship in Health of the Public and Health Services Research (reference G106/1083). HG and the Centre for Paediatric Epidemiology and Biostatistics benefited from Medical Research Council funding support to the MRC Centre of Epidemiology for Child Health (reference G04005546). Great Ormond St Hospital for Children NHS Trust and the UCL Institute of Child Health receives a proportion of funding from the Department of Health's NIHR Biomedical Research Centres schem

The impact of a child's special health care needs on maternal work participation during early motherhood

BACKGROUND: Many women temporarily reduce work hours or stop working when caring for small children. However, mothers of children with special health care needs may face particular challenges balancing childrearing responsibilities and employment demands. This study examines how the work participation among mothers of children with special health care needs compares with that of mothers in general during early motherhood, focusing in particular on the extent of the child's additional health care needs. METHODS: By linkage of the population-based Norwegian Mother and Child Cohort Study with national registers on employment, child health care needs, and social background factors, 41,255 mothers employed prior to childbirth were followed until child age 3 years to investigate associations between the child's care needs and mother's dropping out of employment. RESULTS: In total, 16.3% of the formerly employed mothers were no longer employed at child age 3 years. Mothers of children with mild care needs did not differ from mothers in general, whereas mothers of children with moderate [Risk Ratio (RR) 1.45; 95% confidence interval (CI) 1.17, 1.80] and severe care needs [RR 2.19; 95% CI 1.67, 2.87] were at substantial risk of not being employed at follow-up. The impact of the child's health care needs remained strong also after adjusting for several factors associated with employment in general. CONCLUSIONS: Extensive childhood health care needs are associated with reduced short-term employment prospects and remain a substantial influence on mothers' work participation during early motherhood, irrespective of other important characteristics associated with maternal employment

Motor and social development in 6-month-old children with congenital heart defects

OBJECTIVE: To assess whether the development of children with varying severity of congenital heart defect (CHD) differs from that of children without CHD at age 6 months. STUDY DESIGN: A total of 236 children with CHD were compared with 61 032 children from the Norwegian Mother and Child Cohort Study conducted by the Norwegian Institute of Public Health. Diagnostic and treatment information was retrieved from a nationwide CHD registry. Four groups of CHD were distinguished: mild (n = 92), moderate (n = 50), severe (n = 70), and CHD with comorbidity (n = 24). At child age 6 months, the children's mothers reported on motor and social development by using the Mother and Child Questionnaire. RESULTS: After adjusting for confounders (ie, birth weight), severe CHD increased the odds of gross motor impairment (odds ratio [OR], 3.78; 95% CI, 1.97-7.25) and fine motor impairment (OR, 2.04; 95% CI, 0.96-4.33). CHD with co-morbidity (eg, intestinal malformations) increased the odds of gross motor impairment (OR, 3.00; 95% CI, 0.95-9.51), fine motor impairment (OR, 5.47; 95% CI, 2.03-14.74), and social impairment (OR, 3.43; 95% CI, 1.40-8.41). CONCLUSION: Increased odds of motor impairment are present already in infancy in severe CHD and CHD with comorbidity. CHD with comorbidity increases the odds of social impairment

Occurrence and predictors of developmental impairments in 3-year-old children with congenital heart defects

OBJECTIVE: To examine the occurrence of developmental impairments in 3-year-old children with varying severity of congenital heart defects (CHD) and to identify predictors associated with developmental impairment in children with severe CHD. METHODS: Prospective data collected at birth, 6, 18, and 36 months from the Norwegian Mother and Child Cohort Study (MoBa), conducted by the Norwegian Institute of Public Health, were linked with a nationwide medical CHD registry, and 175 three year olds with CHD in a cohort of 44,044 children were identified. Children with mild/moderate (n = 115) and severe (n = 60) CHD were compared with children without CHD (43,929) on motor, communication, and social impairments as reported by mothers in Norwegian Mother and Child Cohort Study questionnaires. Predictors of developmental impairment were analyzed for the group with severe CHD. RESULTS: Children with severe CHD had >3 times higher odds of communication and gross motor impairments compared with controls, and had 2 times higher odds of any developmental impairment compared with controls. Children with mild and moderate CHD had >2 times higher odds of gross motor impairment but did not otherwise differ from controls. Predictors of impairment identified were previous developmental impairments and smaller head circumference at birth. CONCLUSION: Children with severe CHD have increased odds of developmental impairments at age 3 years. Early developmental impairments are associated with later developmental impairments, suggesting lasting impairments and not merely temporary delay. Patient-specific conditions at birth should be considered and motor and communication support provided to potentially improve outcomes in children with CHD

Symptoms of communication and social impairment in toddlers with congenital heart defects

BACKGROUND: With the advances in congenital cardiac surgery and medical management, mortality rates for congenital heart defects (CHD) have declined remarkably. As the number of CHD survivors have increased there is a growing focus on developmental morbidity. The objective of the current study is to compare symptoms of communication and social impairment in 18-month-old children with different severity of CHD with those of controls. METHOD: We linked prospective data from the Norwegian Mother and Child Cohort Study, conducted by the Norwegian Institute of Public Health, with a nationwide medical CHD registry and identified 198 18-month-olds with CHD in a cohort of 47,692. Three groups of CHD were distinguished: mild/moderate (n= 122), severe (n= 54) and CHD with comorbidity (n= 22). Mothers reported on the child's communication and social skills by completing items from the Ages and Stages Questionnaire as part of the Norwegian Mother and Child Cohort Study. RESULTS: Children aged 18 months old with CHD differed significantly from controls in levels of symptoms of communication impairment (P≤ 0.0001) and social impairment (P≤ 0.0001). The largest differences were found in children with CHD and comorbidity. Children with severe CHD also showed higher levels of both symptoms of communication and social impairment. Children with mild/moderate CHD showed a small difference only in symptoms of communication impairment. CONCLUSION: Children with severe CHD and CHD with comorbidity show more symptoms of communication and social impairment compared with a large cohort at the age of 18 months. It is important to broaden the scope of inquiry to involve communication and social developmental domains

Longitudinal analysis of emotional problems in children with congenital heart defects: a follow-up from age 6 to 36 months

OBJECTIVE: To investigate whether children with varying severity of congenital heart defects (CHDs) have a higher risk of internalizing or externalizing emotional problems at 36 months of age. In addition, to analyze whether a history of emotional problems at 6 or 18 months of age increases the risk of emotional problems at 36 months in children with CHDs. METHODS: Prospective data from the Norwegian Mother and Child Cohort Study, conducted by the Norwegian Institute of Public Health, was linked with a nationwide CHD registry, and 175 children with CHDs were identified in a cohort of 44,104 children aged 36 months. Maternal reports on child characteristics were assessed by questionnaires at child age 6, 18, and 36 months. RESULTS: Children with CHDs did not have elevated scores on internalizing or externalizing problems at 36 months of age compared with controls. Not even the children with CHDs with a history of emotional problems at age 6 or 18 months showed an increased risk. CONCLUSIONS: The absence of risk of emotional problems at 36 months of age in children with CHDs could be a consequence of the completion of the most extensive medical treatment

Relationship Satisfaction Among Mothers of Children with Congenital Heart Defects: A Prospective Case-Cohort Study

OBJECTIVE: To assess the level of partner relationship satisfaction among mothers of children with different severity of congenital heart defects (CHD) compared with mothers in the cohort. METHODS: Mothers of children with mild, moderate, or severe CHD (n = 182) and a cohort of mothers of children without CHD (n = 46,782) from the Norwegian Mother and Child Cohort Study were assessed at 5 time points from pregnancy to 36 months postpartum. A 5-item version of the Relationship Satisfaction scale was used, and relevant covariates were explored. RESULTS: The trajectories of relationship satisfaction among mothers of children with varying CHD severity did not differ from the trajectories in the cohort. All women in the cohort experienced decreasing relationship satisfaction from 18 months after delivery up to 36 months after delivery. CONCLUSIONS: Having a child with CHD, regardless of severity, does not appear to exacerbate the decline in relationship satisfaction

Trajectories of maternal mental health: a prospective study of mothers of infants with congenital heart defects from pregnancy to 36 months postpartum

OBJECTIVE: To chart mothers' trajectories of mental health from pregnancy to 36 months postpartum in order to investigate the association between infants' congenital heart defects (CHD) and compromised maternal mental health. METHODS: Mothers of infants with mild, moderate, or severe CHD (n = 141) and mothers (n = 36,437) enrolled in the Norwegian Mother and Child Cohort Study were assessed at regular intervals from pregnancy up to 36 months postpartum, including measurements at 6 and 18 months, using an 8-item version of the Hopkins Symptom Checklist-25. RESULTS: Mean score trajectories of SCL-8 for mothers of infants with severe CHD deviated significantly from cohort controls 6, 18, and 36 months postpartum, indicating heightened symptoms of depression and anxiety. CONCLUSIONS: Mothers of infants with severe CHD are at risk of compromised mental health from delivery to 36 months postpartum. Strain due to CHD-related interventions is identified as a possible partial mediator of the distress