The life and death of baby Isabella: 'I don't feel she ever had a chance'

When baby Isabella died, she was in her mother’s arms. It was difficult to cuddle the little girl properly, with her back and legs constantly arched in pain, but Isabella loved it anyway. She would lock her big brown eyes on her mum, Lisa, and listen to her talk. It was her favourite place.

Isabella had very few favourite things in her difficult 19-month-long life. She liked bubble bath, and honey on her dummy, and her wooden dolly. On a really good day, she’d manage a rare smile. However, mostly she was struggling to breathe, suffering from the persistent pneumonia that caused her to return to hospital again and again.

“She had so much love but she was also a critically ill baby her whole life,” her mum Lisa Wiggins says. “The hard thing is I still don’t really know what happened to her. I’m trying to find out but it just feels like an uphill battle the whole time.”

Isabella died in September 2017 at Rainbow Place, a child hospice in Hamilton. In the following year, Lisa struggled to deal with her grief. She spent all her energy looking after her two little boys, operating in survival mode, relying on her adult children to help her out.

But as Lisa got better, an uneasy feeling gnawed at her. “I never felt right about it,” she says. She kept going over and over events in her head. She saw a counsellor, but struggled to sleep, wondering about her daughter. 

Lisa understood that Isabella suffered perinatal asphyxia, which is a lack of oxygen at birth, and that had caused a brain injury, epilepsy, cerebral palsy and lung disease. Isabella’s death certificate lists those conditions, plus respiratory failure, and “failure to thrive” as her eventual cause of death.

Except none of this really made sense. The information about the brain damage was confusing, and contradictory. Lisa had both been told there was a haemorrhage, and that there wasn’t, by different doctors.

So Lisa began asking questions, messaging her midwife and doctor to see how she could find out more information from Waikato District Health Board, who were responsible for Isabella’s care. In 2020, she decided to file an ACC treatment injury claim about her daughter’s birth.

Initially, she focused the complaint on issues with her own maternal care, and the emergency delivery. Almost from the beginning, the pregnancy had been a stressful experience - different to how she’d been treated with her other babies, she said - even though she’d had high-risk pregnancies before.

Patient notes provided to ACC show that at a 12-week scan, Isabella was found likely to have Noonan syndrome, a genetic condition. One of Lisa’s other children also had the condition, inherited from his father. In many cases, the condition is mild, but it can cause facial abnormalities, cognitive delay and heart problems.

“That’s when I started to come under pressure to terminate the pregnancy,” Lisa says. “I had nurses ringing me trying to arrange it, even though I didn’t want to.”

She also came under pressure from specialists to have a more invasive genetic test called amniocentesis, which would confirm the diagnosis. Lisa refused, saying she wanted to keep the baby even if she had Noonan’s, despite what the report calls her “adverse social circumstances” - a complex break-up from the baby’s father, two small boys with their own high needs, and post-natal depression from her previous birth.

Then around 27 weeks into the pregnancy, Lisa started to feel extremely unwell. She had headaches, nausea, was twitching and jittery. Records show she was admitted to Waikato Hospital with extremely high blood pressure, discharged, admitted again, and discharged. Less than a week later, in February 2016, Lisa was admitted again. 

The notes state the initial plan was to stabilise her and deliver the baby early, because she likely had preeclampsia - a condition that can lead to complications for both mum and baby.

Lisa was first placed in the High Dependency Unit, but after an assessment by obstetrician Dr Anthony Stock, she was sent back to the maternity ward. Stock, Waikato Hospital's Women's Health clinical leader, wrote in Lisa’s notes that her condition might be “supratentorial” - or in layman’s terms “all in her head” - and that the preeclampsia diagnosis might be wrong. So instead of delivering the baby, Lisa underwent tests to investigate the cause of her headaches, and was seen by a neurologist, who said Lisa had anxiety, but no other neurological issues.

Lisa’s condition fluctuated for the next three days. While she had symptoms of preeclampsia, tests were inconclusive. But on February 16, another obstetrician, Alison Barrett, decided Lisa was too unwell and consulted with an expert in Auckland, who advised Lisa likely did have atypical preeclampsia. Barrett decided the baby was going to be delivered by c-section that night. As Lisa was being prepared for surgery, she had a seizure. Despite that, Isabella was born safely. She weighed 1.413kg. 

‘There was no perinatal asphyxia'

The ACC file into the complaint ends with the birth. They were unable, despite Lisa’s concerns, to find fault with the care. More importantly - they were unable to find that Isabella was harmed because of maternity care. Instead, they prompted Lisa to file a claim about Isabella’s care after birth.

“I couldn’t believe it at the time,” Lisa said. “It didn’t make sense, because of what I’d been told.”

Part of her was reluctant to keep going - the investigation into her own care had already been so dragged out, with Waikato District Health Board providing only partial notes, and the Covid-19 pandemic causing further delays. But she gave permission for ACC to get Isabella’s file, and filed a second claim.

Isabella’s notes were sent to Dr Harshad Patel, a neonatologist from Wellington, to review. On January 15 2021, he filed his report. Lisa never received it. ACC instead sent it to her doctor, who called to say Lisa better come into the clinic, so they could read it together, because of its “upsetting” contents.

Isabella Hope Dowd was born at 28 weeks and three days gestation, Patel said. She had Noonan’s syndrome, and a mild bleeding disorder. But her birth weight was very good. There was no asphyxia at birth. She was admitted to the neonatal intensive care unit (NICU), intubated, and ventilated, because of her immature lungs.

While Isabella’s neonatal management was good, he said the ventilation strategy was “poor”. His report details how over six days, Isabella was left to struggle for breath on the ventilator, impacting her blood pressure and cerebral blood flow.

“Chest sucking in,” the notes say, “still working hard”. The doctors as well as nurses were aware of her respiratory difficulties. The baby was also bleeding into her breathing tube.

Patel said the ventilation strategy was “incorrect”. “Despite several days of respiratory distress whilst on the ventilator, no changes were made to allow her to breathe more comfortably.”

On day seven, Isabella was given a head ultrasound. It found a grade 4 intraventricular haemorrhage, a brain bleed, that only happens in about 1.6 per cent of babies that age. Patel says the haemorrhage was poorly documented in the notes. The finding also wasn’t discussed with Lisa until later. At that point, she wasn’t even told about the head scans.

Patel said despite the “perinatal asphyxia” on the birth certificate, Isabella didn’t have a birth injury. And while at least one of the doctors later told Lisa there was no haemorrhage, a subsequent scan confirmed it had happened. Patel said he was in “no doubt” it was caused by the poor ventilation. That brain bleed then led to the later development of cerebral palsy, which explained Isabella’s poor feeding, her reflux, her failure to grow, and her eventual death from malnourishment and respiratory failure.

For Lisa, that finding alone was bad enough. However, Patel also found issues with Isabella’s care after she was discharged, in early May, after 84 days in hospital.

After she went home, Isabella failed to gain enough weight, even though she had a feeding tube and a high-calorie formula. She was struggling to breathe, going blue, coughing, gagging and arching her back. After seven weeks at home in Te Aroha, with around-the-clock care from Lisa and homecare nurses, Isabella was back in hospital. She was admitted again in November, weighing just 4.75kg. Notes describe her as “looking emaciated” and “cachectic”. In other words: Isabella was starving to death.

The baby remained in hospital for a month. Clinicians discussed whether she had cystic fibrosis, or if it was Noonan's syndrome affecting her growth. In one ward round, a paediatrician said: “I will need to discuss the issues of failure to thrive with the Starship Children’s hospital gastroenterology team”. In another meeting, the paediatrician commented: “If there is no increase in weight in one week, for transfer to Starship children’s Hospital”. But Isabella was never transferred to Starship. 

Instead, she was sent home. By January, she was back in hospital, weighing just 4.27kg. A central line was put in twice, and taken out both times because of infection. Again, a transfer to Starship was discussed, but never happened, although Patel said it should have. Other interventions that would have helped with the reflux were not considered. Instead, Isabella was made a palliative care patient, and any further intervention was withdrawn.

For Lisa, this time is extremely difficult to look back on. She says she felt pressured to sign an “end of life” plan for her baby. She still didn’t really understand what had gone wrong. All she knew was that Isabella was getting more and more unwell before her eyes. She felt like a failure, and she felt judged. At one admission she says a doctor even said to Isabella “is no one feeding you?”

“Except when she got into hospital they found she didn’t gain weight there either,” Lisa said. “Before that I thought they were blaming me.”

Isabella’s last hospital admission was in September. Lisa goes over this moment again and again in her head.

“She was so sick, she could barely breathe, her skin was this awful grey colour,” Lisa says. “I took her into the emergency department and I remember one doctor looking at her and saying ‘that baby needs to go to the ICU’, to intensive care.”

“And then from behind the curtain another doctor said ‘that baby isn’t going to ICU’, because she was palliative. I felt like they had given up on her.”

Isabella was transferred to Rainbow Place. She died on September 27, 2017, her breathing growing more and more laboured, until it stopped.

“There are many reasons for Isabella’s outcome, but I believe that the process started with her early birth,” Patel wrote. “This in itself should not have been an issue… but the mode of ventilation resulted in an intraventricular haemorrhage and neurological injury.”

Clinicians then failed to pick up her reflux and aspiration, which caused persistent low-grade pneumonia, meaning all her energy went on fighting it off, leading to her poor growth, he said.

Patel said her other conditions - including her Noonan’s syndrome - had no bearing on her outcome.

“Nothing about the whole of Isabella’s life made as much sense as when I read that report,” Lisa says. “But at the same time, I felt so sick. Those mistakes took my baby’s life.”

A long road ahead to answers, and accountability

ACC upheld Lisa’s claim, and paid a contribution to the baby’s funeral costs. Because the claim wasn’t filed until after death - and the hospital never filed an injury claim itself - there is no other compensation.

Lisa is now burdened with seeking justice - she has two complaints underway with the Health and Disability Commission, and the Coroner is also investigating the case.

“But I don’t know who to trust,” Lisa says. “I feel like the system, everyone in it, was just trying to save face. When her brain injury happened, they covered it up. How is that ok? There is no way a parent shouldn’t know what is going on.”

She says the extreme trauma of losing her baby has been made worse by the lack of answers, or any acknowledgement that something went wrong.

Waikato District Health Board has refused to comment because of patient and employee confidentiality grounds. But Stuff can find no records of the brain haemorrhage being reported as an adverse event. There was no internal investigation into the death, it appears. It was not reported to the Coroner.

“We do extend our sympathies to any patients and whānau who have experienced a loss,” a statement from the DHB read. But it also said that ACC reports were based on a single clinical view, and “should not be relied upon as a full and comprehensive review of the care provided.”

It urged the media to await a decision by the HDC, before reporting about the case.

Lisa said that wasn’t fair. She has already waited four years, and the HDC process could be at least two more. She wants accountability, and she wants other people to know what happened to her precious girl.

“I keep wondering - why did they treat her like that? Was it because of her disability? She didn’t deserve that,” Lisa says.

“She fought until she passed, she was so strong. But sometimes I honestly don’t feel she ever had a chance.”

THIS ARTICLE WAS ORIGINALLY PUBLISHED HERE