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Taboo around infant death and its effects on families tackled by Newcastle mother Megan Sutton

Megan Sutton sits with her hands clasped.
Megan Sutton says infant death should not be a forbidden topic.

ABC Newcastle: Robert Virtue

Three years ago, Newcastle woman Megan Sutton had her life turned upside down.

For the previous 20 months, she had experienced unbridled happiness after the birth of her daughter Monique. But it cruelly vanished in late 2014 when Monique died after developing bronchiolitis.

Through the pain, Ms Sutton forged a new direction for herself as a dance teacher for children with a disability, all the while keeping the memory of her young daughter close to her heart.

'The best thing that ever happened to me'

Before Monique was born, Ms Sutton learned her daughter had several physical issues, including a hole in her heart and Down syndrome.

"We also knew that she was going to need some operations, and the start of life was going to be a little bit tricky, but she was going to get through it," Ms Sutton said.

"There was never a doubt in my mind that she wouldn't get through it."

The day Monique was born, at 34 weeks, was the happiest of Ms Sutton's life.

"She basically changed my world and is the best thing that ever happened to me."

Baby Monique sits in a capsule.
Megan Sutton says when her daughter Monique was born it was the best day of her life.

Supplied: Megan Sutton

Twenty golden months ensued. There were challenges dealing with some of Monique's health issues, but largely they were a happy duo building a life together.

"I describe her as the happiest little person I've ever seen," Ms Sutton said.

"Her smile always comes to mind, and her cuddles, and just her taking on this crazy world the best she could."

Hope out of the shadows

In late August 2014, Monique developed bronchiolitis — an inflammation of the smallest air passages of the lungs.

After three days fighting the illness in hospital, Monique died on September 2, 2014.

"I guess I had a little bit of a warning that this may happen within those three days leading up to [her death]," Ms Sutton said.

"Before that, there was not a doubt in my mind that anything like this would happen.

An arm is tattooed with Monique Eva and a heart.
Ms Sutton has her daughter's name tattooed on her arm.

ABC Newcastle: Robert Virtue

As the months slipped by after Monique's death, Ms Sutton decided to forge ahead with her plans to start a dance studio for kids with disabilities.

"Mainly because I knew it would keep [Monique's] memory alive," Ms Sutton said.

"Also with her having special needs and knowing that I wanted to do a dance school that was just for children, teens, and young adults with special needs — it just seemed the right thing to do to keep it going."

Infant death not a forbidden topic

The Australian Bureau of Statistics reported in 2016 there were 970 registered infant deaths in Australia.

Ms Sutton said support from family, friends, psychologists, and the charity Red Nose helped her through the months after Monique's death.

But she said there was still a way to go for society to fully accept and help families who lose a child.

"I don't think other people understand. I think a lot of people try to empathise, and definitely people with children can put themselves in that position," Ms Sutton said.

"The thought of 'what' and 'if' could happen is devastating, and people think 'Oh my God, I don't know how you're still alive'. But I guess, I don't know how I am either.

"I guess some people can be really blunt, wondering why you're still mourning over something that has happened, in their eyes, so long ago.

Megan Sutton sits on a step.
Ms Sutton has started a dance school for children with disabilities.

ABC Newcastle: Robert Virtue

Ms Sutton said it was important families felt comfortable publicly remembering their late children.

A memorial service in Newcastle this weekend for families who have lost a child aims to provide that forum.

"It's not a forbidden topic. Whether you've had a miscarriage in early stages, it's still a life. Or whether you've had a little one that's been stillborn, or they've passed from SIDS later down the track, or up until a young person in their teens.

"It's a life, it's somebody who we love, and we need to keep remembering them and celebrating their lives."

If you need support, contact Lifeline on 13 11 14.