Congenital heart defects (CHDs) are the most common birth defects and are an important cause of d... more Congenital heart defects (CHDs) are the most common birth defects and are an important cause of death in children. The fear of sudden unexpected death has led to restrictions of physical activity and competitive sports. The aim of the present study was to investigate the rate of sudden unexpected deaths unrelated to surgery in children 2-18 years old with CHDs and, secondarily, to determine whether these deaths were related to cardiac disease, comorbidity, or physical activity. To identify children with CHDs and to determine the number of deaths, data concerning all 9 43 871 live births in Norway in 1994-2009 were retrieved from the Medical Birth Registry of Norway, the Cardiovascular Disease in Norway project, the Oslo University Hospital's Clinical Registry for Congenital Heart Defects and the Norwegian Cause of Death Registry. Survivors were followed through 2012, and information for the deceased children was retrieved from medical records at Norwegian hospitals. Among 11 272...
Child-related stress following the birth of a child with special health care needs (SHCN) can ta... more Child-related stress following the birth of a child with special health care needs (SHCN) can take a toll on parental health. This study examined how the risk of sick leave due to psychiatric disorders (PD) among mothers of children with SHCN compares with that of mothers of children without SHCN during early motherhood. METHODS: Responses from 58,532 mothers participating in the Norwegian Mother and Child Cohort Study were linked to national registries and monitored for physician-certified sick leave from the month of their child's first birthday until the month of their child's fourth birthday. RESULTS: As compared with mothers of children without SHCN, mothers of children with mild and moderate/severe care needs were at substantial risk of a long-term sick leave due to PD in general and due to depression more specifically. CONCLUSIONS: Extensive childhood care needs are strongly associated with impaired mental health in maternal caregivers during early motherhood.
This prospective case-cohort study compared subjective well-being (SWB) among mothers whose child... more This prospective case-cohort study compared subjective well-being (SWB) among mothers whose children had various degrees of congenital heart defects (CHD) with mothers of children without CHD (controls). Nationwide CHD registry data were linked to data collected from the Norwegian Mother and Child Cohort Study at gestational week 30, 6 months, and 36 months postpartum. A total of 175 mothers of children with mild, moderate, and severe CHD were identified in a cohort of 44,144 mothers. The SWB index was operationalized by means of three subscales: a cognitive aspect, positive affect, and negative affect. Mothers of children with severe CHD reported significantly lower SWB than the controls at 6 months postpartum (p = .003), with further decrease in SWB at 36 months postpartum (p = .001). SWB levels in the mild and moderate CHD group did not deviate significantly from controls. The findings suggest a pattern in which all stressors concerning the severely ill child lead to significant deterioration of maternal well-being. Having a child with mild or moderate CHD, which is a less severe and shorter-term stressor, did not reduce mothers' well-being.
To evaluate the efficacy of first day of life pulse oximetry screening to detect congenital heart... more To evaluate the efficacy of first day of life pulse oximetry screening to detect congenital heart defects (CHDs). We performed a population-based prospective multicenter study of postductal (foot) arterial oxygen saturation (SpO(2)) in apparently healthy newborns after transfer from the delivery suite to the nursery. SpO(2) < 95% led to further diagnostic evaluations. Of 57,959 live births, 50,008 (86%) were screened. In the screened population, 35 CHDs were [corrected] classified as critical (ductus dependent, cyanotic). CHDs were prospectively registered and diagnosed in 658/57,959 (1.1%) [corrected] Of the infants screened, 324 (0.6%) failed the test. Of these, 43 (13%) had CHDs (27 critical), and 134 (41%) had pulmonary diseases or other disorders. The remaining 147 infants (45%) were healthy with transitional circulation. The median age for babies with CHDs at failing the test was 6 hours (range, 1-21 hours). For identifying critical CHDs, the pulse oximetry screening had a sensitivity rate of 77.1% (95% CI, 59.4-89.0), specificity rate of 99.4% (95% CI, 99.3-99.5), and a false-positive rate of 0.6% (95% CI, 0.5-0.7). Early pulse oximetry screening promotes early detection of critical CHDs and other potentially severe diseases. The sensitivity rate for detecting critical CHDs is high, and the false-positive rate is low.
To assess whether the development of children with varying severity of congenital heart defect (C... more 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. 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. 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). 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.
Journal of Developmental & Behavioral Pediatrics, 2011
To investigate whether children with varying severity of congenital heart defects (CHDs) have a h... more 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. 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. 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. 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.
Journal of Developmental & Behavioral Pediatrics, 2011
To examine the occurrence of developmental impairments in 3-year-old children with varying severi... more 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. 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. 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. 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.
We describe the prevalence of extra-cardiac anomalies in children with congenital cardiac malform... more We describe the prevalence of extra-cardiac anomalies in children with congenital cardiac malformations, and their impact on survival, compared to the outcome in children with the congenital cardiac lesions as the only recognised anomaly. Our population comprises the 3527 children born with congenital cardiac anomalies between 1990 and 1999, and registered at the largest tertiary centre for Paediatric Cardiology in Norway. Extra-cardiac anomalies were found in one-fifth of the population, with Down's syndrome accounting for nearly one-third. Survival improved for children born between 1995 and 1999 compared with those born in the period from 1990 to 1994 for all groups, except for children with additional extra-cardiac anomalies in the absence of Down's syndrome. The results were the same for children undergoing surgical treatment of their cardiac malformation. The survival in children with Down's syndrome improved in comparable fashion to those without extra-cardiac anomalies. Children with extra-cardiac anomalies in the absence of Down's syndrome represent a heterogeneous group, with varying patterns of survival. Survival did not improve in these latter patients during the period of our study.
Our objectives were, first, to study seasonal distribution of perioperative deaths within 30 days... more Our objectives were, first, to study seasonal distribution of perioperative deaths within 30 days after surgery, and late death, in children undergoing surgery for congenitally malformed hearts, and second, to study the causes of late death. We analysed a retrospective cohort of 1,753 children with congenital cardiac malformations born and undergoing surgery in the period from 1990 through 2002 with a special focus on the causes of late death. The data was obtained from the registry of congenital cardiac malformations at Rikshospitalet, Oslo, and the Norwegian Medical Birth Registry. The mean follow-up from birth was 8.1 years, with a range from zero to 15.2 years. During the period of follow-up, 204 (11.6%) of the children died having undergone previous surgery. Of these 124 (7.1%) died in the perioperative period, and 80 (4.5%) were late deaths. There were 56 late deaths during the 6 coldest months, compared with 24 during the 6 warmest months (p < 0.01). There was no significant seasonal variation in perioperative deaths. Respiratory infection was the most common cause of late death, and occurred in 25 children, of whom 24 died during the 6 coldest months. Of the 8 sudden late deaths, 7 occurred during the 6 coldest months. There was no seasonal variation for the other causes of death. In children undergoing surgery for congenital cardiac malformations in Norway, there is a seasonal variation in late death, with a higher proportion occurring in the coldest months. Death related to respiratory infections predominantly occurs in the winter season, and is the overall most common cause of late death.
Congenital heart defects (CHDs) are the most common birth defects and are an important cause of d... more Congenital heart defects (CHDs) are the most common birth defects and are an important cause of death in children. The fear of sudden unexpected death has led to restrictions of physical activity and competitive sports. The aim of the present study was to investigate the rate of sudden unexpected deaths unrelated to surgery in children 2-18 years old with CHDs and, secondarily, to determine whether these deaths were related to cardiac disease, comorbidity, or physical activity. To identify children with CHDs and to determine the number of deaths, data concerning all 9 43 871 live births in Norway in 1994-2009 were retrieved from the Medical Birth Registry of Norway, the Cardiovascular Disease in Norway project, the Oslo University Hospital's Clinical Registry for Congenital Heart Defects and the Norwegian Cause of Death Registry. Survivors were followed through 2012, and information for the deceased children was retrieved from medical records at Norwegian hospitals. Among 11 272...
Child-related stress following the birth of a child with special health care needs (SHCN) can ta... more Child-related stress following the birth of a child with special health care needs (SHCN) can take a toll on parental health. This study examined how the risk of sick leave due to psychiatric disorders (PD) among mothers of children with SHCN compares with that of mothers of children without SHCN during early motherhood. METHODS: Responses from 58,532 mothers participating in the Norwegian Mother and Child Cohort Study were linked to national registries and monitored for physician-certified sick leave from the month of their child's first birthday until the month of their child's fourth birthday. RESULTS: As compared with mothers of children without SHCN, mothers of children with mild and moderate/severe care needs were at substantial risk of a long-term sick leave due to PD in general and due to depression more specifically. CONCLUSIONS: Extensive childhood care needs are strongly associated with impaired mental health in maternal caregivers during early motherhood.
This prospective case-cohort study compared subjective well-being (SWB) among mothers whose child... more This prospective case-cohort study compared subjective well-being (SWB) among mothers whose children had various degrees of congenital heart defects (CHD) with mothers of children without CHD (controls). Nationwide CHD registry data were linked to data collected from the Norwegian Mother and Child Cohort Study at gestational week 30, 6 months, and 36 months postpartum. A total of 175 mothers of children with mild, moderate, and severe CHD were identified in a cohort of 44,144 mothers. The SWB index was operationalized by means of three subscales: a cognitive aspect, positive affect, and negative affect. Mothers of children with severe CHD reported significantly lower SWB than the controls at 6 months postpartum (p = .003), with further decrease in SWB at 36 months postpartum (p = .001). SWB levels in the mild and moderate CHD group did not deviate significantly from controls. The findings suggest a pattern in which all stressors concerning the severely ill child lead to significant deterioration of maternal well-being. Having a child with mild or moderate CHD, which is a less severe and shorter-term stressor, did not reduce mothers' well-being.
To evaluate the efficacy of first day of life pulse oximetry screening to detect congenital heart... more To evaluate the efficacy of first day of life pulse oximetry screening to detect congenital heart defects (CHDs). We performed a population-based prospective multicenter study of postductal (foot) arterial oxygen saturation (SpO(2)) in apparently healthy newborns after transfer from the delivery suite to the nursery. SpO(2) < 95% led to further diagnostic evaluations. Of 57,959 live births, 50,008 (86%) were screened. In the screened population, 35 CHDs were [corrected] classified as critical (ductus dependent, cyanotic). CHDs were prospectively registered and diagnosed in 658/57,959 (1.1%) [corrected] Of the infants screened, 324 (0.6%) failed the test. Of these, 43 (13%) had CHDs (27 critical), and 134 (41%) had pulmonary diseases or other disorders. The remaining 147 infants (45%) were healthy with transitional circulation. The median age for babies with CHDs at failing the test was 6 hours (range, 1-21 hours). For identifying critical CHDs, the pulse oximetry screening had a sensitivity rate of 77.1% (95% CI, 59.4-89.0), specificity rate of 99.4% (95% CI, 99.3-99.5), and a false-positive rate of 0.6% (95% CI, 0.5-0.7). Early pulse oximetry screening promotes early detection of critical CHDs and other potentially severe diseases. The sensitivity rate for detecting critical CHDs is high, and the false-positive rate is low.
To assess whether the development of children with varying severity of congenital heart defect (C... more 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. 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. 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). 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.
Journal of Developmental & Behavioral Pediatrics, 2011
To investigate whether children with varying severity of congenital heart defects (CHDs) have a h... more 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. 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. 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. 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.
Journal of Developmental & Behavioral Pediatrics, 2011
To examine the occurrence of developmental impairments in 3-year-old children with varying severi... more 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. 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. 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. 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.
We describe the prevalence of extra-cardiac anomalies in children with congenital cardiac malform... more We describe the prevalence of extra-cardiac anomalies in children with congenital cardiac malformations, and their impact on survival, compared to the outcome in children with the congenital cardiac lesions as the only recognised anomaly. Our population comprises the 3527 children born with congenital cardiac anomalies between 1990 and 1999, and registered at the largest tertiary centre for Paediatric Cardiology in Norway. Extra-cardiac anomalies were found in one-fifth of the population, with Down's syndrome accounting for nearly one-third. Survival improved for children born between 1995 and 1999 compared with those born in the period from 1990 to 1994 for all groups, except for children with additional extra-cardiac anomalies in the absence of Down's syndrome. The results were the same for children undergoing surgical treatment of their cardiac malformation. The survival in children with Down's syndrome improved in comparable fashion to those without extra-cardiac anomalies. Children with extra-cardiac anomalies in the absence of Down's syndrome represent a heterogeneous group, with varying patterns of survival. Survival did not improve in these latter patients during the period of our study.
Our objectives were, first, to study seasonal distribution of perioperative deaths within 30 days... more Our objectives were, first, to study seasonal distribution of perioperative deaths within 30 days after surgery, and late death, in children undergoing surgery for congenitally malformed hearts, and second, to study the causes of late death. We analysed a retrospective cohort of 1,753 children with congenital cardiac malformations born and undergoing surgery in the period from 1990 through 2002 with a special focus on the causes of late death. The data was obtained from the registry of congenital cardiac malformations at Rikshospitalet, Oslo, and the Norwegian Medical Birth Registry. The mean follow-up from birth was 8.1 years, with a range from zero to 15.2 years. During the period of follow-up, 204 (11.6%) of the children died having undergone previous surgery. Of these 124 (7.1%) died in the perioperative period, and 80 (4.5%) were late deaths. There were 56 late deaths during the 6 coldest months, compared with 24 during the 6 warmest months (p < 0.01). There was no significant seasonal variation in perioperative deaths. Respiratory infection was the most common cause of late death, and occurred in 25 children, of whom 24 died during the 6 coldest months. Of the 8 sudden late deaths, 7 occurred during the 6 coldest months. There was no seasonal variation for the other causes of death. In children undergoing surgery for congenital cardiac malformations in Norway, there is a seasonal variation in late death, with a higher proportion occurring in the coldest months. Death related to respiratory infections predominantly occurs in the winter season, and is the overall most common cause of late death.
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