Nikita Tiffen reads to her daughter Julia. Photo: RNZ / Jimmy Ellingham
After parents of newborn twins were told one of their daughters would die due to a rare pregnancy condition, medical staff suggested turning off the machines keeping their other child alive.
The Palmerston North parents refused, and their surviving daughter has just turned 2.
She is doing well, but her mother feels let down by the medical system and ACC.
Surrounded by medical staff, new parents Nikita and Wyatt Tiffen were delivered crushing news just two days after the traumatic C-section birth of twin daughters Matilda and Julia.
Matilda was going to die.
The staff then talked about Julia, who had a collapsed lung and severe brain bleed, and would live with a disability.
"They said this brain bleed has caused permanent damage, which will mean she has cerebral palsy," Nikita said. "She'll have a disability for life.
Nikita said she and her husband were not impressed with these comments, feeling they diminished the lives of people who had disabilities.
"Disability is such a big part of my life, with my little brother being disabled."
Matilda died when she was just two days old - two years ago - of complications from the rare condition, twin to twin transfusion syndrome, caused by a blood-flow imbalance.
Matilda was getting more blood than Julia, but it was harming her organs.
Nikita said although the syndrome was mentioned during her pregnancy, she never thought it was likely.
She had suggested seeing a private specialist in Wellington, but she was told Palmerston North Hospital could look after her or send her to Starship in Auckland if needed.
She said she was also told she was out of the danger zone of the syndrome occurring between 16 to 24 weeks. A full term is 40 weeks.
There were a few warning signs, but no alarm bells rang until 27 November, 2020, when she was 27 weeks' pregnant.
"Things felt a bit quiet. I thought, 'I don't know, maybe. I'm not sure.' So I went to bed and I woke up the next day," Nikita said.
"In hindsight, I feel if we had known more there's probably a big potential I would have done something that night about it, which could be all the world of difference."
The following day she went to Palmerston North Hospital about 8.30am, but she said she did not see a doctor for at least two and a half hours.
Then, when hospital staff realised the gravity of the situation, no specialist unit in the country could take her.
The delay could have been critical as survival rates for twin to twin transfusion syndrome decrease as time goes on.
She was eventually flown by helicopter to Wellington Hospital, where she gave birth about 6.45pm.
Nikita said throughout the day, she was not told much about what was happening.
"Even after I had the babies, I still didn't think someone was going to die, naively and being so ill-informed."
But then medical staff delivered the news about Matilda.
Julia Tiffen plays with her mother Nikita at their Palmerston North home. Photo: RNZ / Jimmy Ellingham
Parents seeking to appeal against ACC declining cover
ACC has declined to provide cover to the Tiffens for a medical treatment injury, a decision that was upheld on review.
Independent disability advocate Jane Carrigan, who is acting for the family, said she would appeal against that ruling in the district court.
Correspondence from ACC reads as if it partly relied on a rarely used section in the Accident Compensation Act, citing resource allocation at the hospital, when reaching its decision.
Information released to Carrigan showed this section was used to decline cover just nine times in the decade from 2010.
"Failure of the obstetric treatment providers to treat in a timely manner has not been established in this claim and there has been no departure from appropriate clinical standards of obstetric care," said the ACC decision, delivered earlier this year.
It described twin to twin transfusion syndrome as an "unpredictable, unpreventable, catastrophic medical event in this case".
"The delays in obstetric review and transfer to tertiary level care on [20 November, 2020] were solely due to resource constraints.
"Life-threatening injuries had already been sustained to the twins and whether these delays contributed to further injury is not established, regardless any potential injuries in this setting would be excluded cover under the legislation."
The letter then cited the section of the act relating to resource allocation.
This week, ACC clarified it declined cover because there was no treatment failure, and apologised for any confusion.
"I can confirm that the reference to resource allocation was not the reason the claim was declined," said Amanda Malu, ACC's deputy chief executive, service delivery.
"As described in our correspondence to Nikita, the claim was declined as a failure was not identified based on the clinical information on file. Treatment has not been identified as the cause of the twin-to-twin transfusion syndrome."
Malu said expert clinical opinion was sought and the clinicians agreed there was no treatment failure.
Independent disability advocate Jane Carrigan. Photo: RNZ / Ana Tovey
Carrigan was not impressed with the apology, saying Nikita was led to believe the public health system would look after her when it could not.
"I accept that people are working under very difficult circumstances in hospitals, but actually providing people with the correct information and discussing issues with people is a basic 101," Carrigan said.
"The way Nikita and the family were managed on the day was appalling."
'Every day I have to live life knowing there should have been two of them'
Julia spent three months in Wellington Hospital and another in Palmerston North, before she returned home.
She is not yet speaking or walking, but plays and communicates well in her own way.
Nikita said her daughter was making big strides thanks to a trial programme in the MidCentral health region which provided funding for physio and other disability needs.
"It's funny having a child who isn't quite moving - she's a busy lady and always on the go, but the cerebral palsy is definitely there."
Carrigan said early intervention was key for children with such disabilities, otherwise their development can be slow, as was happening with a child in another family she advocated for who lived outside the trial programme's boundaries.
Te Whatu Ora MidCentral said it was unable to comment on the Tiffen case for privacy reasons.
Its operations executive for healthy women, children and youth, Sarah Fenwick, said it was sorry for the family's loss.
She said discussions about the risks of twin to twin transfusion syndrome were a normal part of the information given to women giving birth to twins.
"We do continue to inform hapū māmā [pregnant women] of these risks and it's an important part of our regular scanning programmes to maintain the health of pēpi [babies].
"However, we are sorry if that in this case, the patient did not feel adequately informed."
Tiffen said she wanted to share her story so other people were more informed than she was.
She remains thankful her daughter Julia's care was not "redirected" because of her disabilities.
"Look at her now. She's such a sprightly little girl. I can't imagine life without her and every day I have to live life knowing there should have been two of them."