The Courdeaux Heights couple never expected they would be among the 3000 families who suffer the heartbreaking loss of a child as a result of neonatal death, stillbirth of sudden infant death each year in Australia.

Now, they are adding their names to a campaign to ensure those children are not forgotten.

The couple was already parents to four children, Tyler, 10, Charlotte, 9, Blake, 4, and Kaleb, 2, when they found out they were expecting again.

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"We were pretty happy with four because four is a big number, so we were quite surprised when we fell pregnant with Flynn," Mrs Lacey said, adding they were soon excited to welcome a new baby into the family.

They found out at 10 weeks they were expecting a boy, and set about choosing a name to match the other boys in the family. "It had to have five letters and an "L" in it. We struggled to come up with one until about two weeks before he was born," Mrs Lacey said.

She was at her 19-week scan when she was told fluid had been detected inside her baby's chest cavity and she would need an urgent appointment with her obstetrician.

Mrs Lacey was referred to the Maternal-Fetal Medicine unit at the Royal Hospital for Women, Randwick, where doctors diagnosed pleural effusion - an accumulation of fluid in the pleural space around the lungs. Mrs Lacey began weekly trips to Randwick to be monitored.

When she was 25 weeks pregnant, and with the fluid build-up worsening, a decision was made to insert a needle into Mrs Lacey's abdomen, through her uterus wall and into Flynn's chest to remove 125 millilitres of fluid. But a follow-up scan just four days later showed the fluid had returned.

Mrs Lacey underwent another procedure, this time to insert a shunt into Flynn's chest to drain the fluid into the amniotic sac. Within two weeks, the fluid had built up again and Mrs Lacey had to endure yet another procedure to put in a second shunt.

She travelled back and forth to Sydney every week. But the fluid built-up again at 29 weeks.

"We were given three options. Do nothing, which meant he would likely just die in utero, try to deliver him at 29 weeks and hope that the doctors could save him, and the third option was to put another shunt in," Mrs Lacey said.

They went with the third option and Mrs Lacey again underwent the "painful, emotional" procedure, which brought with it a risk of infection or rupturing the membranes, causing premature labour.

Mrs Lacey made it to 31 weeks, and was due to go back to Randwick on December 7. But on December 6, she started experiencing what she thought was Braxton Hicks contractions. She rang The Royal Hospital for Woman in Randwick and was advised to go to Wollongong Hospital to assess if she was in labour before making the trip to Sydney.

She arrived at Wollongong Hospital at 6pm, and although she was having regular contractions, tests showed she was not in labour. A decision was made to transfer her to Randwick at 7.30pm, but before that could be done Mrs Lacey's water's broke.

She sent an urgent message to Nathan, who was at home with their children, to come to the hospital.

"I was taken to the birthing suite and within about five minutes the room was filled with about 10 doctors and nurses," Mrs Flynn said.

"We were told if he was born at Wollongong he most likely would not survive because while they are equipped to care for pre-term babies they are not equipped to care for a really sick baby," she said.

Flynn was born just 20 minutes later at 8.52pm.

"He gave a really little cry and was taken to the resuscitation table and covered in plastic to keep him warm and they put a little beanie on his head," she said.

"I didn't really get to see him because there were so many doctors in the room."

Nathan ran into the room just as his son was being taken to neonatal intensive care, where he was briefly stabilised. The Newborn and paediatric Emergency Transport Service.(NETS) was called to transport him to Sydney Children's Hospital, Randwick.

But when the couple was finally taken in to see their son they found a team of doctors performing CPR.

"They eventually sat me down and basically said they could not do anything more for him. His pupils had stopped dilating, which meant he had no brain function left," she said. "I held him and talked to him and cried over him and his heart just stopped."

Flynn had lived just three hours.

The couple was taken to a room where they spent the next 12 hours with their son.

"We bathed him and dressed him. We had is own wrap and teddy bear we had bought for him when we found out I was pregnant. We took footprints and cut his hair. Then we handed him to one of the midwives and walked out," Mrs Lacey said.

The couple returned home where their daughter was celebrating her birthday with family members.

"After everyone left we sat them down and said 'Your brother is not coming home'. The three older one were very distressed. There was a lot of crying and our two-year-old did not know what was happening. He was just handing tissues to everyone."

The couple tried to put on a brave face for their children at Christmas, but were determined to include Flynn, even hanging a Christmas stocking with his name on it.

But Mrs Lacey said she was aware on Christmas Day that some family members felt uncomfortable discussing their loss.

Having got through Christmas, Mrs Lacey was struggling with her grief. She eventually got in touch with Sands, a volunteer-based organisation providing care to bereaved parents.

In 2019, the organisation had asked for feedback from bereaved parents, who said talking about their loss, and in particular, saying the name of their child, brought comfort.

This led to Sands holding the first 'Say Their Name Day' to reduce the stigma of pregnancy and infant loss.

Sands has since merged with Red Nose Australia, a national charity working to save little lives and support families impacted by the death of a baby or child.

It said 'Say Their Name Day' on March 25 was about saying goodbye to the stigma, shame and silence that still follows the death of a baby.

Red Nose Australia chief executive Keren Ludski said, "Everyone knows that talking about the death of a baby can be an incredibly hard conversation. But many parents tell us they want people to talk about their babies.

"Their babies existed, they were wanted and much loved and they need to feel them acknowledged.

"'Say Their Name Day' is a way to start opening up this conversation in a really accessible way. Talking about the loss of a baby really can help a parent who is incredibly distressed."

Mrs Lacey said their family would light a candle today (Friday) in memory of Flynn.

"We talk about him every day with the kids," she said.

"A lof of people find it confronting that our children talk about him but we have told our children he will always be a part of our family.

"Just because he is not here does not mean he is not a part of our family."

And she hopes others will do the same,

"I know when people say Flynn's name or ask about him they think they are going to remind us he has died but we know our child has died. We have to deal with it every day. It's more upsetting when people try to hide it."

You can get involved in Say Their Name Day by adding your child's name to the online memory wall, sharing your story on social media, creating an online tribute fundraiser, or donating to Red Nose.

Details: Click here saytheirname.org.au

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