[Practical experiences with home ventilation in childhood].

BACKGROUND: The introduction of portable ventilators independent of compressed air as well as non-invasive devices for assessment of blood gases, helped to facilitate a long-term mechanical ventilation in family environment in the last decade. Home care is of particular interest at the infant age, as the disruption of the mother-child relationship may induce severe developmental disorders, known as syndrome of psychosocial deprivation.

PATIENTS AND METHODS: We investigated retrospectively the tendency of the ventilator parameters, the support and the daily practice of 16 families with children of all ages with long-term ventilator assistance.

RESULTS: The duration of the ventilation ranged between 5 months and 14 years, on the average at 5.5 years. The average portion of the ventilation at home care was 78%. The respiratory patterns, tidal volume and positive inspiration pressure, exceeded occasionally the physiologic standard of the age group. The common reason is, that the children prefer small sized tubes, having advantages in comfort and speech abilities. Therefore results an increased tube-resistance and air leakage of the tracheostomy tubes. The long-term tendency of the ventilator parameters is stable or improving, excluding the patients with progredient primary diseases. Commonly the motivation of the family members is high, therefore the psychosocial integration of the patients satisfying. Two thirds of the families have no personal support for the domiciliary care of the ventilator assisted child. Mothers tell about an enormous distress.

CONCLUSIONS: The long-term mechanical ventilation of children at home care is an adequate therapy for all ages. It combines technical support of the underlying chronic respiratory failure with the chance of an intact psychosocial development of the child. Specialized centres and a national organisation may provide competent information and support for the increasing number of home-ventilated children in Germany.