My birthing experience was the gold standard – but it's not like that for all mothers with disabilities

I was numb from the waist down.

It was as though someone was washing dishes in my stomach. A pull here. A tug there.

My senses were heightened.

I could hear and smell everything. But I could see nothing. I'm blind.

I also have a neurological condition called Charcot-Marie-Tooth, which impacts my sensitivity, balance and muscle tone.

In years gone by, the regular beep of hospital equipment and those smells of disinfectants I was now experiencing would have terrified me.

A sense of quiet urgency hung in the air. I had a bandage wrapped around one hand keeping a cannula in place, my husband's hand tightly holding the other. I was awake. My tummy was open on the operating table.

I was completely calm.

I was having my baby via emergency caesarean-section like tens of thousands do each year. It was probably the most vulnerable I'd ever been.

But somehow I felt in control.

I'm no stranger to surgery. Having lived with blindness and a neurological condition all my life I've notched up my fair share of hospital stays.

Many of the operations I had in my childhood have left me feeling traumatised. Sometimes I find the smells and sounds of hospitals triggering. There wasn't any one incident that made me feel scared. It's just a build up over time of having procedures as a child when you don't really understand why you're having them.

It leaves you feeling uneasy and stressed.

When I found out I was pregnant there were so many unknowns. My neurological condition impacts my sensitivity and balance. I wasn't sure I'd feel fetal movement.

As my belly grew, would I still be able to walk around independently without tripping over?

I didn't want to see a different midwife or doctor every appointment where I'd need to retell my story. It's time-consuming and for many people with disability, can resurrect old trauma.

I'd heard stories where deaf mothers had given birth without Auslan interpreters, parents with intellectual disability having social workers turning up at their bedside to assess their fitness to be a parent and autistic women whose needs weren't catered for in the birthing suite.

I wanted my experience to be different.

Working together to navigate the health system

I was a public patient in a high-risk midwifery program. My first appointment was an open and honest one.

My midwife Cherie Desreaux and her team had decades of midwifery experience but they'd never cared for a mum with disability. They didn't know how to navigate this journey but they were confident together we'd figure it out.

Cherie admits she was nervous in the lead-up to our first appointment.

"I remember speaking to you over the phone and had been upfront about my lack of experience caring for women with disability and in particular, women who were blind," she said.

"I recall saying something along the lines of, 'But I'm an experienced midwife and you've never had a baby before, so let's learn about your pregnancy together'."

Cherie and I quickly discovered that there were very few resources for parents with disability.

Reading materials weren't accessible, videos shown during the birthing classes weren't audio described for someone who was blind and there was no training and step-by-step guides to help the team know how to best support me.

We came up with our own strategies by drawing on our networks for advice and support.

While I had already found physios, exercise physiologists and occupational therapists, Cherie formulated an individualised care plan for me. It mapped out everything I needed to prepare for motherhood including face-to-face sessions with lactation consultants and hands-on training I could do to learn how to bath, change and dress baby safely.

But then we got to the pointy end of the pregnancy and the plan needed to change.

My 36-week scan showed up some abnormal function with my placenta and four days later, I found myself nervously waiting outside a surgical theatre.

Initially I felt scared about the prospect of having a C-section.

It was only when the anaesthetist came out to introduce herself and her team that everything started to feel calm. I was told who would be in the room during my procedure and what their roles would be. They asked what I needed to feel more comfortable.

And despite feeling frightened and desperately hoping that my baby would be okay, I was confident I was in the right place.

Maternity support is limited

In my research during pregnancy I could only find one specialised maternity program for mothers with disability. The Women With Individual Needs Clinic is run by Melbourne's Royal Women's Hospital, where a midwife with experience in disability could provide specific care.

Program coordinator and midwife Laura Seymour says while there are good midwives and services across the country, generally the system isn't set up for parents with disability.

"There's a real lack of awareness among maternity providers about recognising disability, what particular needs might be and maybe even a lack of confidence in having those conversations," she said.

"In many cases it requires women themselves to advocate and while some might have amazing health literacy, others, depending on their disability and how much trauma they might be holding with the system, it might be harder to do."

Ms Seymour suggests several improvements to the system, including women with disability being prioritised for midwifery programs where they are seen by the same person.

"They should have access to disability specific clinics should they want them, which include wrap-around services like midwives, occupational therapists, physiotherapists and doctors who can communicate with each other," she said.

"We also need written resources that maternity staff can draw on, particularly in rural hospitals, where there might not be disability specific programs."

It's a learning experience

When my midwife Cherie and I reflected on our experiences, she said her biggest challenges were finding resources specific to my needs and the use of language.

"I realised pretty quickly how often my words just didn't fit to your needs, but changing the way I described things to you became quite natural over the course of the nine months," she said.

"As a maternity service there is still much to do to build on resources for pregnant women with disability, and building relationships and networks with disability organisations for support and guidance is paramount.

"For now, we continue to provide individualised care relevant to the person — not just their disability — and hopefully we will see more women with disability achieve pregnancy, birth and parenting in their own beautiful way."

The gold standard of care

I always wondered how I'd feel not being able to see my baby once he was delivered.

Would I feel like somehow I was missing out by not visually experiencing that first moment together?

But when it did arrive, it all felt so right. He was so warm and tiny on my chest. He stopped crying the minute his skin touched mine. I couldn't wait to take him home.

My birthing experience was what I'd describe as the gold standard; one where individual needs are considered and accounted for.

But it was also sadly based on luck.

I was lucky to strike a team willing to support me in the way me and my baby deserved.

Every mother with disability across Australia should be able to expect the same.

Source: ABC