Dr Simone Watkins carried out the research as part of her PhD at the University of Auckland's Liggins Institute. Photo / supplied
A paediatric doctor took time off her clinical work at Starship Hospital to interview the parents of babies born with sometimes fatal critical congenital heart disease, to understand why survival rates are higher for Pākehā. This is what she heard.
Dr Simone Watkins spent months travelling the country to interview families whose babies were born with major heart conditions, which in some cases they didn’t survive.
The spur for the project, carried out by Watkins and other researchers from the University of Auckland’s Liggins Institute, was a troubling finding from nine years of data relating to hypoplastic heart syndrome.
About once a month, a baby is born with the condition, where the left side of the heart is underdeveloped. It usually requires multiple surgeries after birth.
Survival rates after one year for Māori and Pacific babies (44% and 41% respectively) were lower than for NZ European children (58%). Māori and Pacific babies were more likely to get palliative care, rather than active treatment.
The differences didn’t seem to be explained by the severity of the condition itself.
Watkins, who is of Samoan and European descent, took time off from clinical work at Starship Hospital to interview families of babies with critical congenital heart disease (not just hypoplastic heart syndrome) to understand more about their experiences.
The paediatric doctor also interviewed health specialists and workers who treat the babies.
Watkins and another researcher interviewed 25 parents (5 were Māori, 6 Pacific, 4 Asian and 10 NZ European) and 20 healthcare workers, between 2022 and 2023.
The resulting findings have now been published in the BMC Health Services Research journal. The qualitative study concludes “persisting inequities in critical congenital heart disease healthcare quality occur by ethnic group, with the New Zealand healthcare system privileging European families”.
Pākehā families were more likely to report a positive experience in terms of the care received, and how it was delivered and discussed with them.
“We were aware that we’re really fortunate in New Zealand to have such a level of care,” one mother said.
“We were blown away by how good everyone was,” another father reported.
That contrasted with the experiences of some of the Māori, Pacific and Asian interviewees.
One Māori mum said social workers came to the hospital after their son was born.
“They pretty much accused the reasoning behind me going into labour ten weeks early was because I was in a violent relationship, you know, and it’s just unnecessary. And I honestly believe it was because he’s quite rough-looking, you know…don’t make assumptions, because you don’t know.”
Another Māori mother said she felt like healthcare workers would, “go the extra mile for Pākehā”.
Communication could be a problem. A Māori mother recalled being told her baby daughter would be given palliative care (to provide relief from pain for an illness that cannot be cured).
“I’m like, ‘What is that?’ She’s like, ‘We’re just gonna care for you and baby for as long as we can for when baby is born.’ Then, I said, ‘Well, that’s really strange because the doctor in Auckland said that her heart was operable. Now you’re telling me that it’s not.’”
Another mum, who spoke English as a second language and lived in a poor rural area, told Watkins that, “especially with pregnancy and women, miscarriages and all that, we [society and medicine] forget that we [mothers] have feelings and emotions…we’re humans dealing with humans, not humans dealing with cars.”
A mum of Pacific descent felt, “I’m not good enough, or maybe they [the medical team] don’t want to help my baby”. An Asian mother felt doctors needed to be more sensitive: “They didn’t consider me as human”.
Regardless of ethnicity, parents recalled the emotional turmoil that followed a diagnosis.
“What grief do you want? Pick your grief,” a Māori mother said. “Terminate the child now, regret it for the rest of your life. The what if. Decide not to do the surgery, watch your baby suffer and die.”
A Pākehā mum described the experience as “absolutely horrific”. “I never really understood PTSD [post-traumatic stress disorder] until I hear that noise [of the hospital monitors.]”
All parents talked about the need for wide-ranging support, including financial, emotional, cultural and psychological, but, Watkins’ research article noted, “systems and supports did not appear to encompass all parental needs and usually were delivered through charities”.
“I just don’t get any time to just breathe; it’s just still a little bit difficult…the guilt was horrible… and, ideally, we would have his dad here, but one for his mental health, he needs to be at work because he feels like that’s the only way he’s being productive and helpful is by making money and paying the bills,” a Māori mother commented.
One mum was comforted by being able to send her son into surgery with a taonga [treasured cultural possession], but another Māori mum spoke of her father being told he couldn’t do karakia [prayer] in NICU.
“He was denied because they [the medical team] said that might offend other families that were around.”
Kimberly Duron was one of the parents interviewed. She was expecting her third child with husband Francois, when the 20-week anatomy scan picked up a problem with her baby’s heart.
The two main arteries leaving the heart were reversed, causing oxygen-poor blood to flow back into the body without passing through the lungs.
A scan at Middlemore Hospital confirmed the transposition of the great arteries (TGA). A specialist explained the condition using a diagram and answered their questions - Yes, baby would survive in the womb (oxygen was provided through the placenta), but they would need open heart surgery after birth.
“I said, ‘What if he doesn’t?’” said Duron, 39. “They said it is likely that within 3 to 10 days he would pass away.
“You just sit in a state of shock. She was really great, she obviously had these conversations a lot with parents, and she gave us space and said, ‘Just come out when you’re ready for me to come back in, and I’ll answer questions if you have any.’”
The couple met a team from Starship’s paediatric cardiac surgery centre the following week and had more scans. A cardiologist told them their son would be one of about 12 babies to have such an operation each year, and, without other complications, the survival rate was about 98%.
“We were doing our research and could see that Auckland has one of the best paediatric cardiac teams in the world. That made us feel more confident.”
Duron, who was unwell with gestational diabetes, was offered a Caesarean section but opted for a vaginal birth. Her son, Tamatoa, was born on August 30 2022.
The room was crowded with specialists. The couple had been warned that their baby might be whisked straight to NICU, but, after checks, mother and son were able to cuddle.
“Honestly, all the emotions from that 20-week scan [came out]. I had put all the thoughts behind doors - I might lose my baby at birth, I could lose him when he’s a week old, I could lose him before the surgery, I could lose him after the surgery…I wouldn’t wish it on anybody.”
More tests were done (the couple had been thoroughly briefed, so nothing was a surprise), and Francois accompanied a stable Tamatoa to NICU, to await the operation. Back on the maternity ward, Duron woke about 3am after a few hours of sleep.
“I messaged my husband, ‘How are you?’ And he’s like, ‘Not good, everyone is here and it’s an emergency.’”
Duron leapt up and yelled for directions to NICU. When she arrived medics were desperately trying to lower Tamatoa’s heart rate, which was spiking dangerously high.
“It was like a cardiac arrest…it was horrific. I thought, ‘Oh my god this is it - he’s not even a day old and we are going to lose him.’”
Eventually, Tamatoa’s heart rate was brought down with drugs. Duron struggled to sleep again. Her son had his open heart surgery when he was 8 days old.
“The surgeon, Johann [Brink], was phenomenal. He talked us through exactly what he was going to do in the surgery, which breaks your heart when you hear it, but I got the feeling from him that he was looking forward to it, from a medical professional view - this is what he does, this is his art, this is his gift. It was amazing. I was quite honoured to have a surgeon of his capability. I could feel that he was behind it, 110%.”
The surgery was a total success. Tamatoa is now on yearly follow-up appointments, and is a happy, healthy 2-year-old, embracing life in Northland’s Karikari Peninsula.
“He’s full of beans. He just has this real love in him. I said to my husband, ‘He knows - he is happy to be alive, this baby’. He’s like, ‘Yeah, let’s do it, let’s have a good time’. That’s his vibe.”
Duron is Māori and her husband is French Polynesian. She is deeply grateful for New Zealand’s healthcare workers.
“I just felt that all these people were doing their absolute best. I didn’t feel that I received any different treatment.
“I saw babies that didn’t get to go home with their mums and dads. It was heartbreaking. Perhaps that’s part of our journey - it has worked out so well, so all I can be is grateful.”
The couple always had their questions quickly and thoroughly answered, but Duron noticed some families who appeared more hesitant to probe.
“In PICU I saw a Pacific Island family, and they were so shy and quiet. They didn’t want to ask questions, whereas me and my husband were like, ‘What are you looking for? What should his heart rate be?’
“There are quiet families, who maybe feel intimidated by people who are doctors and surgeons, who might say, ‘Do you understand that?’ And they might say, ‘Yes’, when they haven’t really.”
Watkins agreed and said that, overall, her interviews found non-Pākehā families were less likely to feel there had been a proper partnership with healthcare teams when deciding on treatment and surgery.
“I think they [the medical team] try to [listen to my requests], but for them, it’s a lot like science-based, doctor based and then the family come afterwards, what the mother thinks,” a Māori mother told her.
Pākehā parents were comparatively more comfortable to question or push back.
“So, ‘I don’t want to be a pushy hypochondriac and demand that I’m entitled to all these different tests, but this is what I’ve been told, and I know that this is the case,’” one said.
“I guess if you wanted more, you’d have to advocate for yourself, you know, it comes back to that - are you strong enough to advocate for your needs?” another mum commented.
One doctor noted that some parents could be more direct: “The Pākehā children, in many cases, the parents are overly anxious and overly worried, and get the child pushed ahead [for cardiac surgery].”
However, other healthcare workers said they treat everyone the same, and their role is to inform and support parents.
“It’s not my decision. It’s you that has to live with whatever you choose,” one doctor said.
“We are here to help you find the best path for you, so it’s okay. I’m not going to judge you on that,” another specialist stated.
“We’ve always just tried to be fair to everyone,” a different doctor told Watkins.
Those interviewed were employed at the Starship Child Health paediatric cardiac surgery centre, maternal fetal medicine (MFM) centres at Auckland, Wellington and Christchurch hospitals, and a MFM hub in Counties Manukau.
Some expressed exasperation at the systemic constraints and limited resources and help, such as information being available in languages other than English.
“I am really concerned about the lack of equity across the cultures, even within our own service…without realising it, we are letting Māori children in particular, and some Pacific children, go way beyond their [surgery] dates,” a doctor told Watkins.
Another specialist said, “I think it is harder to gain full rapport with particularly some of the different ethnic group women, and that’s obviously a limitation for all of our healthcare”.
A growing number of studies and reports - including hospitals’ own data analysis - show Māori and Pacific people are much more likely to suffer worse health outcomes, and subpar treatment within the health system can contribute to that.
Some steps to fix that major problem have been controversial, however, including a Health NZ tool that prioritised patients for non-urgent care using factors including clinical priority, time spent on the waitlist, geographic location (isolated areas), deprivation level and ethnicity.
It has now been abandoned, after criticism including from Health Minister Dr Shane Reti, who said “Clinical decisions should be made on the basis of health need first”. Just this week, Prime Minister Christopher Luxon criticised Hawke’s Bay authorities for prioritising young Māori and Pacific for free GP and nurse services.
Watkins now works at Whangārei Hospital and, as was the case at Starship, sees on her shifts how Māori, Pacific and Asian babies can suffer worse health outcomes.
The causes are complex, she said, and data analysis done for her own PhD pointed to factors like poverty and weight/condition at birth.
However, she believes that her interviews with families and healthcare workers show improvements can be made within hospitals and clinics.
Attitudes are changing, she said, with more colleagues happy to try things like cultural safety training and work to understand their unconscious bias. Longer-term, she hopes the workforce better reflects society’s diversity.
Watkins, a mum to two boys, aged 6 and 8, has presented her findings at different hospitals. They have been taken seriously, she said, although there are usually some doubters in the audience.
“But it’s really hard to argue with the facts, and it’s even harder to argue with someone’s story,” Watkins said.
“And I would say, as a baseline as a healthcare professional, do you feel okay that this is what some families are reporting? And if it’s not okay, what can you do?”
Nicholas Jones is an investigative reporter at the Herald. He won the best individual investigation and best social issues reporter categories at the 2023 Voyager Media Awards.
Her carers said the socks were to stop the woman from chewing on her hands.