Objective: This study explored the experiences of parents caring for the child with hypoplastic left heart syndrome (HLHS); from diagnosis to the child’s second surgery occurring at approximately four months of age.

Methods: A qualitative study using a phenomenological approach in the form of semi-structured interviews of seven mothers and six fathers (n=13). Interviews were analysed using a general inductive approach allowing the dominant and significant themes to emerge from the findings.

Results: Consistent themes described the unrelenting emotional anxiety experienced by parents caring for their child with HLHS. Significant impacts were felt throughout the entire family unit, with life revolving around ensuring the survival of the child. Parents faced significant challenges in navigating a complex and fragmented health care environment, with geographical remoteness from the tertiary cardiac centre placing some families at a disadvantage. Parents sought to have control over their lives through knowledge acquisition, developing and accessing supports, managing family and home environment, as well as, through developing successful relationships with health professionals.

Conclusion:
The study identified the extraordinary achievements of parents as they faced the challenges of caring for their child with HLHS within the New Zealand setting. They needed support from knowledgeable and empathetic health professionals who were responsive not only to the needs of the child, but to the concerns of the parents themselves. Education of health professionals, resource development, care coordination and collaborative practice across the health care continuum are key areas for change to ameliorate the identified impacts and pressures for these families.