Ethnicity changes odds for babies with heart defects

There’s no shortage of evidence pointing to poorer health outcomes for Māori and Pacific people in Aotearoa. Even for babies with heart defects, ethnicity changes the odds. Here, Dr Simone Watkins, a Sāmoan doctor and PhD student at the Liggins Institute, outlines the problem.

When a baby is born with a rare but potentially fatal heart defect, the odds of survival are lower for a Pacific or Māori infant than for a Pākehā/European.

I’m going to try to find out why.

These babies’ heart conditions are so severe that keyhole (less invasive) or open-heart surgery is needed within the first month of life for the child to survive.

Resigning from my job as a paediatric doctor at Starship Hospital to take on this three-year PhD project at the University of Auckland’s Liggins Institute wasn’t a decision that I made lightly, but it’s a topic that is — literally — close to my heart.

Not only am I Sāmoan, but I was born with a hole in my heart (a defect that was not serious and closed on its own) and I have a child with a genetic condition.

I’ve been a doctor for nearly 10 years, most of them as a paediatric trainee, including almost a year with the Paediatric and Congenital Cardiac Service, the national centre for the diagnosis and treatment of babies and children born with heart problems.

Working with heart kids is rewarding but also heartbreaking. Families come to ward 23B of the Starship Hospital in Auckland to receive the earth-shattering news of a child’s serious heart condition that can require multiple hospital stays and surgeries or even result in death. Some babies’ heart problems can’t be fixed and they receive palliative care, where the focus is on keeping the child comfortable until their time of passing.

A study published in 2018 by Dr Elza Cloete, then of the Liggins Institute, shows why we need to take a deeper look at the ethnic disparities. She zeroed in on nine years of data relating to one type of heart condition: 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. Dr Cloete’s study showed that the survival rates after one year for Māori and Pacific babies (44 percent and 41 percent, respectively) were much lower than for Pākeha babies (58 percent).

There were many more differences by ethnicity, including rates of termination (lower for Māori and Pacific mothers than for Asian and European mothers) and rates of stillbirth (higher for Māori and Pacific.)

One potentially worrying statistic was that Māori and Pacific babies were more likely than Pākehā babies to receive palliative care rather than active treatment.

We don’t know why. That’s another area that I’ll investigate.

Overall, the differences in outcomes were striking.

Families’ cultural and religious beliefs, health literacy, socioeconomic status, geographic locations and access to transport and therefore hospital may all have played roles. What role may language or cultural barriers play? What about biases within the healthcare system?

Tackling this project, I bring my experiences as a mother of two boys, a daughter, a doctor, a Sāmoan, and an academic.

While I fully appreciate Aotearoa New Zealand’s effective and robust health system, I struggle with the knowledge that, despite all we know and do, minority populations still fare worse than their Pākehā counterparts.

I’ve seen these disparities in my own life, through members of my extended family who died too young, the paternal grandparents I never knew because of their early passing, and my father’s encounters with serious illnesses — and misdiagnosis — before he had even turned 50.

I’ve witnessed racial stereotyping and experienced multiple forms of stereotyping myself.

In medicine, I’ve seen occasions when “challenging” families with brown skin didn’t seem to get the attention they deserved. Being a family on the receiving end of the health system has also given me insights into doctor-patient communication.

Although Aotearoa does a lot of things right, our health institutions have gaps which require improvement.

For my study — “Why do outcomes of critical congenital heart disease in New Zealand differ by ethnicity?” — I’ll interview parents/whānau after their baby has been diagnosed with a heart defect, and then again after doctors have completed a treatment plan.

I’m hoping that my own rollercoaster experience of learning during pregnancy of my child’s complex medical needs will help me to connect with families and share their journey. Their voices need to be heard and their stories need to be told.

I’ll also be interviewing the doctors to understand their perspectives, and analysing a wealth of data about the mothers, the babies and the treatment plans.

We’ve known about ethnic disparities in health care, it seems like, forever — from reduced lifespans for Māori and Pacific people to worse outcomes across almost any measure.

Perhaps we have the “diagnosis” right for racial inequities in Aotearoa but use the wrong interventions. Now, it’s time to move beyond handwringing to real equity.

My investigation may make a small contribution toward achieving that goal.

Dr Simone Watkins was born in Auckland, and her father is from the village of Mo’ototua in Sāmoa. She went to St Cuthbert’s College and then Auckland University where she graduated with a bachelor of medicine and bachelor of surgery with distinction in 2011. She is now a doctorate student at the Liggins Institute investigating why outcomes of critical congenital heart disease in New Zealand differ by ethnicity. Simone is also an advanced paediatric trainee doctor and works as professional teaching fellow at the University of Auckland.

Simone’s PhD will be funded by a $260,000 Health Research Council grant and supervised by Professor Frank Bloomfield, Honorary Professor Tom Gentles and Dr Teuila Percival.

This article is republished from E-Tangata.