Parents fight ACC over birth trauma

After parents of newborn twins were told one of their daughters would die because of 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 received crushing news 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 a 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 Tiffen said. ‘‘She will have a disability for life.’’

Tiffen said she and her husband were not impressed with these comments, feeling they diminished the lives of people who have disabilities. ‘‘Disability is such a big part of my life, with my little brother being disabled.’’

Matilda died when she was 2 days old – two years ago – of complications from the rare twinto-twin transfusion syndrome, caused by a blood-flow imbalance.

Matilda was getting more blood than Julia but it was harming her organs. Tiffen 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 children’s hospital in Auckland if needed.

She said she was also told she was out of the danger zone of the syndrome occurring between

16 and 24 weeks. A full term is 40 weeks.

There were a few warning signs, but no alarm bells rang until November 27, 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,’’ Tiffen said.

‘‘In hindsight, I feel if we had known more, there is 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 2 1⁄2 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 twinto-twin transfusion syndrome decrease as time goes on.

She was eventually flown by helicopter to Wellington Hospital, where she gave birth about 6.45pm.

Tiffen said that 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.

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 on behalf of 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 nine times in the decade from 2010.

The ACC decision, delivered earlier this year, said: ‘‘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.’’

The decision described twin-totwin transfusion syndrome as an ‘‘unpredictable, unpreventable, catastrophic medical event in this case’’.

‘‘The delays in obstetric review and transfer to tertiary level care on [November 20, 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 for 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 twinto-twin transfusion syndrome.’’

Malu said expert clinical opinion was sought and the clinicians agreed there was no treatment failure.

Carrigan was not impressed with the apology, saying Nikita had been led to believe the public health system would look after her when it could not.

‘‘I accept 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.’’

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 in her own way.

Tiffen said her daughter was making big strides thanks to a trial programme in the MidCentral health region that provided funding for physiotherapy and other disability needs.

‘‘It is funny having a child who isn’t quite moving – she is 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 could be slow, as was happening with a child in another family she advocated for who lived outside the trial’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 mā mā [pregnant women] of these risks and it is an important part of our regular scanning programmes to maintain the health of pē pi [babies]. However, we are sorry if that in this case, the patient did not feel adequately informed,’’ Fenwick said.

Tiffen said she wanted to share her story so other people were more informed than she was.

She remains thankful that Julia’s care was not ‘‘redirected’’ because of her disabilities.

‘‘Look at her now. She is 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.’’

‘‘Providing people with the correct information and discussing issues with people is a basic 101.’’