University of Auckland: Families of babies born with severe heart defects will tell their stories

The team, which includes specialist doctors from Auckland City and Starship Children’s Hospital, are investigating why fewer Māori and Pacific tamariki survive critical congenital heart disease compared with European babies.

The Health Research Council has awarded $377,000 of funding for the three-year project, headed by Professor Frank Bloomfield, the director of the Liggins, a University of Auckland research institute.

The researchers will ask families about their experiences of the medical system, starting with the baby’s diagnosis, as part of trying to understand why the ethnic disparities exist.

The project springs from a study of nine years of data relating to a condition called hypoplastic left heart syndrome.

About once a month, a baby is born with this life-threatening condition where the left side of the heart is underdeveloped, typically needing multiple surgeries.

Survival rates after one year for Māori and Pacific babies with this defect (44 percent and 41 percent, respectively) were lower than for European babies (58 percent). Māori and Pacific babies were more likely than Pākehā babies to receive palliative care rather than active treatment.

“Lower survival rates in Māori and Pasifika tamariki don’t seem to be explained by the severity of the condition itself – that’s why we are taking a much closer look at all factors,” says Professor Bloomfield. “We expect that this study will shed some light, and may lead to changes in the way we care for these whānau.”

Besides listening to families, the researchers will analyse birth data and talk with the heart specialists who treat the babies.

Dr Simone Watkins has taken a break from her career as a paediatric doctor at Starship Hospital in Auckland to take on the three-year PhD project.