Call for disability status of pregnant women to be recorded to improve the standard of care

Dennisse Bonanno's universe exploded in one excruciating moment she likes to call the Big Bang.

On a girls' getaway to a Portarlington beach house in 2011 she was struck by a sudden, severe headache that quickly turned into medical nightmare.

Mrs Bonanno's student nursing friends knew this was no hangover from hell, but a desperate, life-threatening emergency.

The last thing she remembered was a doctor leaning over her hospital bed saying, "See you on the other side", as she slipped into a three-week induced coma.

At the age of just 20, a ruptured brain aneurysm caused a stroke that left Mrs Bonanno unable to walk and with little movement in her left arm and hand.

On New Year's Eve, eight years later, she was back in hospital — this time for the celebration of her life.

Mrs Bonanno gave birth by caesarean section to a healthy, bright-eyed boy called Maximus at Melbourne's Royal Women's Hospital.

She received maternity care through the hospital's specialist Women with Individual Needs (WIN) clinic for patients who have a physical or sensory disability, learning difficulty or cognitive impairment.

Mrs Bonanno is among an estimated 9 per cent of Australian women of childbearing age who have a disability, but little is known about their health during pregnancy, birth and the first year of motherhood.

Researchers from La Trobe University and the Royal Women's want to change that by improving the way disabilities are identified at maternity hospitals.

They found patients from the WIN clinic were more likely to have a caesarean section and give birth pre-term, in a study published in the Australian and New Zealand Journal of Obstetrics and Gynaecology.

Their babies were more likely to be low birthweight, require resuscitation, be admitted to the Neonatal Intensive Care or Special Care Unit and receive formula in hospital.

Recording disability status will improve care, researcher says

The researchers compared the perinatal outcomes of 111 women with a disability who received care through the clinic between 2014 and 2018, with hospital-wide data.

While the Victorian and National Perinatal Data Collections report on all births, a woman's disability status is not included in the list of mandatory items, despite research finding an association between disabilities and poorer health in mothers and babies.

La Trobe University researcher Charlie Smithson is calling for women's disability status to be asked about and routinely recorded during pregnancy care.

"To be able to provide the best quality care to these women, we need to make sure that we're identifying them in the first place," she said.

"If they were deaf, they might not have had an Auslan interpreter there for their appointments. If they were vision-impaired they might not have been able to read the consent forms, even things like the menus on the postnatal ward."

While other hospitals might record information about patients with disabilities, there is no uniform approach and a subsequent lack of proper national data.

Ms Smithson said that would help researchers understand the potential link between disabilities and poorer perinatal outcomes and ensure women were not missing out on extra help during pregnancy, labour and the early days of motherhood.

"There's a lot we're yet to learn about the effects of various disabilities on pregnancy and birth."

Midwife Cherise Smith runs the Royal Women's WIN clinic, which sees 30 to 40 women a year.

She believes the identification of disabilities is fundamental to providing good maternity care, because women might need closer monitoring or extra help at home.

"Women with disabilities often come with more complex health problems, therefore we know they have more complex pregnancies," she said.

"We can also advocate for the women in helping them prepare for going home with their baby and being able to care for them as confidently and as independently as they can."

Some women with conditions like Multiple Sclerosis might not identify with having a disability, while others might be reluctant to reveal they have one for fear someone might doubt their ability to care for a newborn.

The removal of children from people with disabilities — particularly those with cognitive impairment or mental illnesses — by child protection agencies also worries advocates.

While the issue has not arisen during the course of her research so far, Ms Smithson said it was an important topic that could warrant further study.

Learning tricks to adapt to motherhood

The Australian Institute of Health and Welfare manages the National Perinatal Data Collection.

In a statement, the agency said it recently focussed on developing data items relating to alcohol use in pregnancy, family violence and mental health.

"The NPDC does not currently collect disability status; however, if determined by our advisory groups to be a priority item for data development, it could be added to our work program," it said.

A Victorian Health Department spokesperson said Safer Care Victoria, which monitors healthcare standards, was focusing on a major upgrade of the state's perinatal data collection.

Dennisse Bonanno has learnt to walk again, although she has a slight foot drag, and now only lacks fine motor control in her left hand.

When Maximus was born she was in the care of Cherise Smith, who arranged for simple but important things like a breastfeeding pillow and a private hospital room so her husband could stay to help look after him.

Mrs Bonanno quickly adapted to life as a mum, by learning clever nappy-changing tricks and other workarounds, like bringing her son safely downstairs in a baby carrier.

Even if it takes a few extra steps, she will find a way to do it.

"My goal is to be the best mum I can for him, I know I can do it."

Source: ABC