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There are new insights into the pathogenesis of cot death ('sudden infant death syndrome'; SIDS). Based on these new insights, the Dutch Paediatric Association and the Dutch Child and Youth Health Care Physicians have drawn up a new guideline 'Prevention of cot death', which replaces the consensus statement of 1996. The 2 major differences from the old guideline are that co-sleeping of young infants in the same bed with the parents is now actively discouraged under the age of 4 months, and that the supine sleeping position is recommended from birth on. The recommendation that lying on one side can be used during the first 2 weeks of life has now been withdrawn.

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OBJECTIVE: Description of unhealthy behaviour and views regarding nutrition, physical exercise and education in families with young children, in relation to specific groups with a high risk of overweight. DESIGN: Cross-sectional study. METHOD: In wellbaby clinics for infants and toddlers in various sites in The Netherlands 534 parents were requested to fill in questionnaires on nutrition, physical exercise and education. Enquiry into background characteristics took place and several hypotheses were tested. Using a bivariate and multivariate analysis each hypothesis was examined with regard to linkage of the answers to specific high-risk groups. RESULTS: 73% (390 parents) responded. Overweight was found in 15% of the 2-4-year-olds, this included 3.7% with obesity. Relatively often, parents held views and showed behaviour characteristic of an unhealthy lifestyle for young children. For example, approximately 1 out of 7 families was not used to having breakfast. 43% of the respondents considered sweetened milk products approprite substitutes for milk and 39% of the children always had soft drinks at their disposal. One fifth of the parents indicated that they did not have enough time to go out with their child. Approximately 1 out of 10 toddlers aged 2-4 years had a TV in their own room; 22% were allowed to determine whether they wanted to watch TV or not and 9% were allowed to decide how long they watched. Such specific high-risk behaviour was seen in particular in families with non-western mothers, mothers with a low level of education or mothers living on social security. Regular use of child care or a nursery seemed to have some protective effect. CONCLUSION: In families with children aged 0-4 years, behaviour patterns related to overweight at a later age were frequently observed. In view of the increased incidence of overweight and obesity in young children, initiation of research aimed at optimisation of education is warranted, which should include special attention for the behaviour of parents with regard to 5 spearheads: breast-feeding, more outside play and more physical exercise, a regular wholesome breakfast, less consumption of sweetened drinks and less TV and computer use. Implementation of interventions in young age groups is able to prevent the development of unhealthy lifestyle and childrearing styles.

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High-resolution analyses of complex chromosome rearrangements (CCR) have demonstrated in individuals with abnormal phenotypes that not all seemingly balanced CCRs based on G-banding are completely balanced at breakpoint level. Here we report on an apparently balanced de novo CCR involving chromosomes 2, 3 and 5 present in a 6-month-old girl. She was referred for genetic evaluation because of severe psychomotor retardation, distinctive dysmorphic features and microcephaly. A 1Mb resolution array-CGH analysis of DNA from the patient revealed a deletion of about 6Mb for chromosome 2. FISH analysis showed that the deletion interval found in band 2q22 mapped at the translocation breakpoint, and that the ZFHX1B gene, which is known to be involved in the Mowat-Wilson syndrome, is located within the deletion interval. To our knowledge this is the first case of a complex chromosomal rearrangement associated with Mowat-Wilson syndrome. Our data illustrate the important role for high-resolution investigation of apparently balanced chromosome rearrangements in patients with unexplained psychomotor retardation and/or other clinical features, and should contribute to our understanding of the mechanisms involved in chromosome rearrangement.

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OBJECTIVE: To test the hypothesis that swaddling is an effective method to reduce crying, we compared a standardized approach of regularity and stimulus reduction with the same approach supplemented with swaddling. STUDY DESIGN: Healthcare nurses coached 398 excessively crying infants up to 12 weeks of age for 3 months. Outcome measurements were crying as measured by Barr's 24-hour diary and parental perception of crying. RESULTS: Crying decreased by 42% in both groups after the first intervention week. Swaddling had no added benefit in the total group. Young infants (1-7 weeks of age at randomization) benefited significantly more from swaddling as shown by a larger decrease of crying over the total intervention period. Older infants (8-13 weeks of age at randomization) showed a significantly greater decrease in crying when offered the standardized approach without swaddling. The actual difference in crying time was 10 minutes. CONCLUSION: For older babies, swaddling did not bring any benefit when added to regularity and stimuli reduction in baby care, although swaddling was a beneficial supplementation in excessively crying infants <8 weeks of age.

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Since 1985, measurement of the length of neonates has been practically abandoned in the Netherlands because it was thought that stretching the legs and knees briefly in order to measure the length immediately after birth could be harmful for the development of the hip joint. However, this fear seems unjustified. Measuring the length of the neonate provides useful information regarding the general condition and has predictive value for the final adult height. If an infant is disproportionately small in comparison with its weight or small for its gestational age with insufficient catch-up growth, this may be an indication of underlying pathology. As a rule, the length of all neonates should be measured immediately after birth and length measurement should be re-introduced as part of standard care. Length measurement can be done with sufficient accuracy after proper instruction. For babies born after incomplete breech presentation, length measurement should be postponed for about a week.

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INTRODUCTION: This paper describes the development and initial psychometric evaluation of the Handicap Scale for Children (HSC). This questionnaire is based on the London Handicap Scale (LHS), a valid and reliable utility instrument for measuring social participation in adults. METHODS: A multidisciplinary research group was involved in developing the HSC. The questionnaire was tested in 114 children with a chronic disease and 239 healthy children in the 8-18 age range. Relating the Health Utility Index Mark 3 (HUI3) attributes to corresponding HSC scores tested the assumption that a negative health status would lead to participation problems. RESULTS: Questionnaire development resulted in a five-dimension questionnaire: mobility, physical independence, daily activities, social integration and orientation. Each dimension included one item with a six-point response scale. A higher score indicates greater handicap. Feasibility testing with 10 children showed that none of the children experienced difficulties in filling in the questionnaire. Conceptual validity, measured by correlations between the dimensions of the HSC and HUI3, was satisfactory. As expected, moderate correlation coefficients between predefined pairs of HUI and HSC attributes were found; other correlation coefficients were low. Criterion validity was also satisfactory, as shown by large differences between the healthy and the chronically ill group and by several criteria within the chronically ill group. CONCLUSION: Based on this initial evaluation, the questionnaire seems feasible and valid for use with children in the age range 8-18 years.

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From 1979 to 1993 Turkish infants had a significantly higher cot death risk compared to Dutch infants. In contrast Moroccan infants had a risk of cot death that was approximately three times lower compared to Dutch infants during the same period. This study shows that these differences have disappeared, while differences still exist in infant care practices between these ethnic groups. At 28 well-baby clinics, questionnaires were distributed for this sample selection. The response was 82%. Data were collected on 55 Turkish, 54 Moroccan, and 210 Dutch families. Less than 7% of these three ethnic groups still placed infants in the prone position. Moroccan mothers hardly smoked. Turkish people used pillows and Moroccan people used soft mattresses more often. Moroccan families practised swaddling more widely. Length of maternal residence influenced some care giving practices. As a result of this study, subgroup specific intervention campaigns for safe sleeping can be developed for Turkish and Moroccan families.

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UNLABELLED: In the Netherlands a case control study into cot death was undertaken as part of the European Concerted Action on sudden infant death syndrome. Children between 1 week and 2 years of age who died suddenly and unexpectedly were reported. Non cot death cases were excluded after a consensus by three pathologists. The study comprised 73 cot death cases and two controls per case, matched for date of birth. Compared to national data, the coverage was 91%. We investigated whether in the Netherlands new risk or preventive factors might have emerged. The present report focuses on the relative risks of dummy use, thumb sucking, breast versus bottle feeding, and sleeping with the mouth open. CONCLUSION: Dummy use seems to be an important preventive factor for cot death in the Netherlands, independent of other risk factors such as prone sleeping and bedding. We recommend dummy use at least for bottle-fed infants. We found no indication that dummies influence the frequency or duration of breast feeding but more data are needed. Mouth breathing appears to be associated with an increased risk for cot death, but again further research is needed.

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UNLABELLED: In the Netherlands an 18 months case control study into cot death was undertaken as part of the European Concerted Action (ECAS) on sudden infant death syndrome to determine the relative risk of prone sleeping and other sleep practices. Physicians in the Netherlands were asked to report to the study centre all sudden and unexpected deaths of children between 1 week and 2 years of age. Non cot death cases were deleted from further analysis after a consensus was reached by three pathologists, not primarily involved in the post mortem diagnosis. A positive response of families was achieved in 91% of cases registered in the Central Bureau of Statistics. The study comprised 73 cot deaths and 146 controls, two for each case and matched for date of birth. All families were visited at home for completion of a questionnaire. The cot death rate has dropped considerably over the past 10 years after the recommendations on supine sleeping to a low of 0.26 per 1000 live born infants. In addition to the ECAS objective, we wanted to establish whether previously found risk factors are still valid in the present situation or that new factors might have emerged, some of them possibly protective. CONCLUSION: Placing an infant prone or on side on last occasion, secondary prone position (not placed prone but turned to prone), inexperienced prone sleeping and use of a duvet, leading to head and body being covered, were shown to be risk factors. Preventive factors were using a cotton sleeping-sack and a dummy. Even in a low incidence country, such as the Netherlands, there are indications that further prevention is possible.

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Infants that died suddenly and unexpectedly were studied as part of the European Concerted Action on sudden infant death syndrome (SIDS). Three paediatric pathologists, first independently of each other and later in a consensus meeting, classified 63 cases into 3 groups: SIDS (19 cases), borderline SIDS (30 cases) and non-SIDS (14 cases). The interobserver agreement among the pathologists before the consensus meeting was moderate (Kappa = 0.41) and jointly it was higher (Kappa = 0.83). The distribution of epidemiologically determined risk factors was studied over these three groups. Maternal smoking after birth, low socioeconomic status and thumb sucking were found more often in SIDS than in the other cases. Inexperienced prone sleeping was a determinant for SIDS, but not for non-SIDS. Previous hospital admission, low birthweight and/or short gestation were associated with borderline SIDS. Non-SIDS cases received more breastfeeding, the parents hardly smoked during pregnancy and after birth, a firm mattress had been used, and more often signs of illness had been reported by the parents, compared with the SIDS and borderline SIDS cases. Bedding factors and both primary and secondary prone sleeping were equally distributed over the three groups which supports the hypothesis that, in SIDS and borderline SIDS, as well as in non-SIDS cases, some similar external and preventable factors might influence the events leading to death. Research should therefore focus on all sudden unexpected deaths, after which subgroups such as SIDS cases can be separately analysed. The postmortem is an essential part of the whole work-up of each case and the results should be interpreted with all other available data to arrive at a sound evaluation of cases and thus form the basis for the prevention of all sudden unexpected infant death.

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This study aimed to assess whether previously established risk factors for sudden infant death syndrome (SIDS) are still valid now that the incidence in the Netherlands has dropped to 0.26 per 1000 liveborn infants. A distinction was made between immutable and mutable risk factors. This case-control study (part of the European Concerted Action on SIDS) comprised 73 SIDS cases and 146 controls and lasted from March 1995 to September 1996. Adjustments were made for sleeping position and bedding factors by treating them as covariables. Apart from these factors, well known risk factors that remain of importance in the Netherlands are: male sex, young maternal age, twins, and low socioeconomic status. These factors are largely immutable. Other well known risk factors which might reflect attitudes to child care and could possibly be mutable are: smoking, alcohol consumption by the mother, bottle feeding, and change of babycare routine. Intervention strategies should focus on early signalling, thereby assisting parents in changing these unfavourable parenting attitudes. Information on optimal child care and extra support by public health nurses specifically aimed at families at risk could help to decrease further the incidence of SIDS in the Netherlands.

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In sudden infant death syndrome (SIDS) apnea is the terminal event; whether or not an obstructive apnea is the primary event is unknown. Collapse of the pliable pharyngeal airway during life would not be detected after death and is therefore hard to prove. The distinctive distribution of petechiae at necropsy can be explained by negative intrathoracic pressure before death suggesting upper airway obstruction. Obstructive sleep apneas have been documented in subsequent SIDS victims: however, polysomnography is not predictive for individual infants. It is unknown how many ALTE (apparent life threatening event) infants would have died of SIDS without intervention. About 4-10% of these events are caused by upper airway obstruction. There have been well documented cases of ALTE infants who in time developed the symptoms of obstructive sleep apnea syndrome (OSAS). Obstructive apnea certainly causes some cases of ALTE; whether it also causes a subgroup of SIDS is unknown.

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Until the early 1970s the traditional sleeping position for Dutch infants was not prone. After a much publicised lecture in October 1987 on the possible relation between sleeping prone and cot death, the fairly new habit of placing infants prone is being replaced by more traditional positions. The decrease in the prevalence of the prone sleeping position has been documented in six studies. Since 1987 the incidence of registered cot deaths has decreased from 1.04/1000 live births in 1986 to 0.44 in 1991; the real decrease of sudden unexpected death in infancy, however, is greater.

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There is considerable interest in the relationship between sleeping position and the occurrence of sudden infant death syndrome (SIDS). As changes have been reported in The Netherlands in the position infants have been placed to sleep, the national Dutch sudden infant death rates were analyzed over the time that such changes have taken place. The overall post-perinatal death rate (1 week less than 1 year) was around 4-4.5 per 1000 live births from 1969 until 1985. From 1985 until 1989 the rate fell from 4.1 to 2.9 per 1000 live births. During the same period the cot death/SIDS rate rose from 0.44 per 1000 in 1969 to between 1.08 and 1.31 per 1000 in 1977-87, and subsequently fell to 0.7 per 1000 in 1989. These trends coincided with changes in prone sleeping position demonstrated in national surveys. The problems of interpreting such national data, with only 50-60% of infant deaths being autopsied and with the possibilities of misclassification over time, are fully discussed. The data are supportive of the relationship between prone sleeping position and cot death.

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