Pregnancy and Infant Loss Awareness 2020: Emily Magee on losing her daughter and what happens after

Instead, she was planning her unborn baby's funeral.

Her baby Regina developed 1q21.1 deletion, a rare chromosomal condition associated with learning disabilities, developmental delay, infection, heart problems and other possible issues.

"The 1q21.1 deletion is incredibly rare," Ms Magee said.

"A sample of 1000 people in the "normal" population would find no carriers; a sample of 1000 people with some form of disability might find 10.

"Less than one per cent of an already minority population."

The condition was revealed by geneticist Matt Edwards, who presented the option of termination.

"I was 28 weeks pregnant, spending the weekend planning my child's funeral. The service: a theme? Songs? Did we want to say something? Write something? My heart dropped when thinking about surnames. We weren't married. Would Reg take my name or his? Should we get married? What will my baby wear? What would I wear? Did we want a viewing?"

Ms Magee, of Waratah, in Newcastle, in NSW's Hunter region, is sharing her story during Pregnancy and Infant Loss Awareness month, with a local remembrance service going online this year for parents like Emily to honour and reflect on their lost children.

READ MORE:

But the grieving process hasn't stopped for Ms Magee, after her child was born sleeping the day before Mother's Day this year.

"Wednesday 13 May I held my daughter in my arms for the last time," Ms Magee said.

"Nothing will ever fill that void. To love and anticipate this precious life only to have it whisked away. It's the kind of heartache other parents can sort-of imagine but perhaps never truly grasp.

"For those who haven't had children, it is possibly even more unbelievable."

And while she said the caring, supportive messages flooded in from those close to her at the start, they quickly stopped and sometimes, they weren't that caring at all.

Messages such as "the hard part is over".

"The hard part has just begun," Ms Magee said. "We must now navigate the rest of our lives without our baby.

"It's a lived experience. It doesn't stop."

Ms Magee said she believes part of the problem is that pregnancy and infant loss is not talked about as much as it should be.

"We need to be able to speak about this more freely and openly," she said. "Instead of just dismissing it.

"When you look at the statistics - one in four pregnancies ends in miscarriage. That's pretty significant.

"It's really important to bring facts into the conversation.

"You look around your workplace and wonder how many women it has happened to. And it's not just the women who are affected, it's the fathers as well."

Ms Magee said the upcoming memorial service was a way for those people who have experienced infant and pregnancy loss to come together.

"It's a really nice opportunity to connect with people who do understand," she said. "No one in my personal circle has gone through this. They can't truly understand what I'm going through."

The Northern Cemeteries service usually takes place in person at Sandgate, however COVID-19 has led to an online event this year.

The program will incorporate the International Wave of Light event where participants are encouraged to burn a candle to honour and remember lost babies, forming a continuous chain of light spanning the globe for a 24 hour period.

The service will be held on Thursday at 7pm. To watch, visit https://www.youtube.com/channel/UCu0jGh7yI9ovBPlSnbLOvYg/videos