MORE than anything, Sophie Toneguzzi wanted another baby.
The Port Stephens woman and her partner had been hoping for a younger sibling for their two-year-old daughter, Eden.
So when Sophie fell pregnant fairly quickly, the whole family was overjoyed.
Blue confetti had scattered "everywhere" the moment they learned they were having a little boy at a gender reveal party.
"We were over the moon," Miss Toneguzzi said.
"We started buying blue clothes and little boy things - we were so excited to have a girl and a boy."
But on a Monday afternoon, late in August, Miss Toneguzzi went in to have a 20-week morphology scan.
She was excited.
Her partner took their daughter for ice cream.
"I went in alone, and they started the scan and everything seemed normal... I was then told to empty my bladder completely, so I did," she said.
"I came back, laid down and they continued to do the scan. Then the lady said, 'I'll be right back, I'm just going to get the doctor'.
"We all know that when they go to get the doctor during an ultrasound that it can't be good news."
Miss Toneguzzi laid there, anxious and worried and scared, hoping everything was going to be OK.
"They returned and continued to scan for a bit... Then they stopped and the lady stepped back. The doctor turned to me and said, 'I'm so sorry, but we cannot find a heartbeat'.
"I instantly fell apart. 'How? How is there no heartbeat? He is in there - I've heard his heartbeat from his eight and 12-week scan!'.
"I felt lost. I didn't understand why. I was told to go straight to my doctor. I went outside and called my partner, and he came running."
It was on the Monday they found out her baby's heart had stopped beating due to "placental abruption" - a complication in which the placenta detaches from the womb. But she had to wait until that Friday night to give birth to him at the John Hunter Hospital.
"It really messed with our heads," she said. "I was carrying my lifeless baby around inside me, and it was not good for me or my partner's mental health.
"I was told to call the birthing suite at 6.30am to go in. I called to be told there were beds but things could change and to call back at 8.30.
"When I called back I was told the beds were full, and to call back at lunch time.
"I was furious. I felt like I wasn't a priority because my baby had already passed away.
"I feel there needs to be a lot more support."
Miss Toneguzzi had a phone appointment with a midwife a couple of weeks after her first trimester appointment at the hospital.
"I actually did ask them on the phone then - 'Is it normal to not feel him moving that much at the moment?' They said it was normal, because I was still quite small. Now that I think about it, I don't know."
Miss Toneguzzi said she'd undergone a second scan which had confirmed the devastating news. Her baby had died.
"I remember looking at the screen and seeing our little boy's still body inside me," she said.
"We had to talk about me having to give birth to our son. If we wanted him cremated or buried - all things you do not want to talk about, but you have to.
"We fell apart... walking out of the hospital with my beautiful lifeless baby inside me. Walking past pregnant ladies. It shatters you."
At 7.55pm on September 4, their son - Huxley - was born. He weighed 185 grams, and he was 18.5 centimetres long.
"He had tiny toes and fingers, little ears and eyes. He was perfect," she said.
"We spent the night with him, as we were offered a cuddle cot - which is a bassinet with a cooling system that gives families the opportunity to spend much needed time with their angel babies. The next morning, having to walk out of the hospital with empty arms - nothing but the bags we had taken in - was one of the hardest things we have ever had to do."
Miss Toneguzzi said the pain was "indescribable". The loss, profound.
"We had no idea how often stillbirth actually happens," she said.
"Ever since losing our Huxley, all I've wanted to do is raise awareness around pregnancy and infant loss.
"Bears of Hope have been a huge help for us. It can feel like a really lonely experience, but there is support out there."
Miss Toneguzzi has also created a support group via Facebook called Pregnancy & Infant loss Port Stephens & Hunter region. The couple is now expecting another baby. The pregnancy had eased their sadness, but it had not taken away the pain of losing Huxley.
"I hope sharing my story will help others. It happens so often, but it's not spoken about much," she said.
John Hunter Hospital general manager Leanne Johnson acknowledged "stillbirth is a very sad and distressing time for families".
"I was saddened to hear about Sophie's experience, and would like to express my sincere condolences for her family's loss. We have reached out to her and would welcome the opportunity to speak with her about her experience," she said.
"We aim to admit women the day they are told their baby has died or early the following day. However, the care plan for each woman is made on a case-by-case basis depending on their individual needs and preparations that must be completed prior to birth.
"We support mothers and their families to spend private time with their babies in the birthing unit following stillbirth. We also provide social work services and refer families for pastoral care, if they wish."
Across the state, there were 595 stillbirths and 220 neonatal deaths recorded on the Maternal and Child Health Register, according to the latest NSW Mother's and Babies Report.
The most common cause of perinatal death was congenital abnormalities, followed by maternal conditions. The most common cause of neonatal death was extreme prematurity, followed by congenital abnormalities.
Mums and bubs in the spotlight
THE John Hunter Hospital recorded the most neonatal deaths in the state in 2019, and was second only to Broken Hill Base Hospital for its rate of stillbirths, NSW HealthStats data shows.
There were 55 stillbirths and 33 neonatal - or newborn - deaths at John Hunter Hospital in 2019.
Across Hunter New England, there were 73 stillbirths, and 34 neonatal deaths, according to NSW HealthStats data.
The latest NSW Mothers and Babies Report puts the perinatal death rate across Hunter New England at 10.6 per cent, above the state average of 8.0 per cent.
In the report, the Hunter New England region came behind the Far West local health district, which had a perinatal death rate of 13.7 per cent, and Western NSW, at 10.8 per cent.
"Sadly, each day in Australia, six families deal with the tragedy of stillbirth and unfortunately many of these tragedies are not preventable. NSW Health recognises the grief and loss for parents and families who experience the death of a child," a NSW Health spokesperson said.
"Hunter New England is a unique local health district in NSW - it has the largest number of maternity services which stretch across major regional and rural and remote facilities, all of which refer to John Hunter Hospital for tertiary care. The combined rates of stillbirth do not reveal the clinical complexity that is managed at individual hospitals."
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The annual Mothers and Babies Report, based on 2019 data but released this month, found that of 3965 births at John Hunter Hospital, 55 per cent were normal vaginal births, 20.9 per cent were elective caesarean sections, and 13.4 per cent were emergency c-sections.
Of 1767 births at Newcastle Private Hospital, 41.1 per cent were vaginal births, 34.5 per cent were elective c-sections, and 10.7 per cent were emergency caesareans.
The data was released ahead of the Fourth Australian Atlas of Healthcare Variation report this week, which found that about half of planned caesarean births before 39 weeks were performed without a medical or obstetric reason.
The national report, produced by the Australian Commission on Safety and Quality in Healthcare and the Australian Institute of Health and Welfare, found that there were 5381 planned caesarean section births performed without a medical justification at less than 39 weeks gestation in 2017.
In NSW, these made up 51.8 per cent of the early caesarean sections performed during the year.
Professor Anne Duggan, the acting chief medical officer of the commission, said there were times when babies needed to be born early, or come early. But there had been a clear shift towards earlier c-sections without medical justification.
"Planned early births are more likely to go to neonatal intensive care, more likely to have infection, more likely to have jaundice - and this is just the early problems," she said. "But there is also good evidence that you are setting them off on a life course that is different to a baby that is allowed to grow to maturity," she said.
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