Infant well-being following neonatal cardiac surgery

Aims and objectives. To investigate infant well-being as measured by feeding and sleeping and parental support following discharge from the NICU in infants following major cardiac surgery. Background. Infant feeding and sleeping have been identified as two of the most important concerns reported by parents. These concerns have been reported anecdotally for infants who have undergone cardiac surgery in the neonatal period. Design. A prospective study using questionnaires and phone interviews followed a cohort of parents of neonates who underwent surgery in the neonatal period for congenital heart disease. Methods. The study was conducted using validated questionnaires and phone interviews with a semi-structured questionnaire. The questionnaires were administered prior to discharge from the NICU and interviews took place following discharge on five occasions within nine months. Results. Fifty six infants and mothers were followed for nine months following discharge from NICU. Sixty-eight per cent were breastfeeding on discharge however the rates decline over time in line with healthy infants. Mothers were not bothered by their infant's sleep patterns which were consistent with those of healthy infants at six months. There were 37 episodes of re-hospitalisation and the average time of further surgery was five months following discharge from their initial period of hospitalisation. Conclusion. The issues from this pilot study warrant further investigation. Factors such as multiple hospitalisations, parent education and support may vary within contexts and need to be studied to ensure optimal supports are identified for this high risk population. Relevance to clinical practice. This study identified several issues that can improve care provided to these infants and their parents. Support following discharge could include: lactation consultant to provide follow-up calls to identify concerns with breastfeeding, lactation course for paediatric nurses providing follow-up and education for Early Childhood Clinics on Congenital Heart Disease.