Objective To identify the short and longer term needs of parents whose children sustain severe brain injury after cardiac surgery and to determine what further measures could be of use to the family after such a catastrophe.

Design Qualitative analysis of data generated by semistructured interviews and a series of self report questionnaires.

Setting Tertiary cardiothoracic referral centre.

Subjects Group 1: four sets of parents (eight individuals) whose children had suffered severe brain injury after heart surgery; group 2: four sets of parents (seven individuals) caring for children with acute brain injury from other causes.

Results The data provide evidence of social, emotional, physical, practical, and financial difficulties. After the children suffered brain injury following cardiac surgery their parents did not receive information, support, and practical assistance as early as they needed it.

Conclusions Although a small population was studied, it would seem that a structured, planned health care service response to this devastating event is not established; therefore, the needs of these parents are not well met. The parents and our inquiries suggest that a coordinator who is not attached to the hospital where brain injury occurred might optimally fulfil this role.