Rhian Cramer, 36, a midwife from Ballarat, didn't get to hold her baby until he was one-week-old.
For the first two days, which she spent in ICU, she didn't even remember having a baby. As Rhian's body and brain began to shut down with severe pre-eclampsia, she was rushed into theatre to have Darcy at just 29 weeks. He was put by Rhian's face for a quick photo before being hastily taken to the neonatal intensive care unit, where he spent the next five weeks hooked up to machines.
"He didn't tolerate being held, his heart rate would drop, and his oxygen level would drop," Rhian tells Essential Baby.
Despite being a midwife, walking into NICU that first time was overwhelming for Rhian. "It was shocking and took me a minute to compose myself. The first thing you see when you go into a NICU is nursing staff and big machines and lots of drips. You can't actually see your baby through all that equipment.He was on a ventilator and he wasn't doing well. He was vomiting and his oxygen levels weren't great."
Darcy is now eight-years-old and Rhian still feels "horrendous guilt" that her body failed him and cries recalling his early entry into the world and those traumatic weeks spent in NICU.
"It was absolutely gut-wrenching (not being able to hold him). It felt like he wasn't mine because I had to ask permission to do anything with my own child. I felt like I was outsider and someone else had control of my baby."
On day six she was released from hospital and was provided with nearby accommodation in Melbourne, and together with another mum from NICU travelled daily to see her baby, spending from 7:30am until close to 9pm in the unit. Her husband, unable to cope with NICU, returned to Ballarat.
"I would cry leaving the hospital every day," Rhian says. "I was very isolated at night. If I could have slept there I would have."
Every morning, Rhian would arrive and find a chair and breast pump to be able to express milk. She was able to sit in a curtained-off room to express, but found expressing away from her baby was unsuccessful, so eventually she had to let go of her inhibitions and sit topless perched on a stool beside her baby in an open room pumping from both breasts.
The trauma of NICU stayed with Rhian and Jason long after they were finally able to bring Darcy home. Rhian was diagnosed with anxiety and depression and she suspects Jason suffered PTSD.
Rhian was desperate for more children, but specialists advised them not to try immediately or at least wait three years. However, Jason had decided he couldn't go through the distress of NICU again. For 12 months their marriage was on the rocks while Rhian had to decide whether to stay with him and accept never having another child or leave.
Eventually they agreed to have another baby, but Rhian suffered four miscarriages in 18 months, losing five babies.
Globally, one in 10 born premature every six hours in Australia a baby is born requiring the assistance of NICU or special care nursery.
According to neo-natal clinical nurse consultant at Westmead Children's Hospital, Nadine Griffiths, the effects of NICU on parents can be long-lasting, multifactorial and severe.
"The sights, sounds and smells and there is a level of grief associated with it because they are mourning the loss of a normal pregnancy," she explains. "We know that when babies who have had surgery and tubes and lines it can be really confronting. They can have their eyes closed and their skin see-through.They can be scared to touch their own children. It is overwhelming there are machines and sounds they aren't prepared for and this is not what they thought their child would look like."
She said some parents can't hold their baby for days, sometimes weeks and on rare occasions months because they are too unwell, and it can be too risky to move them.
In these cases, parents are encouraged to hand hug their babies. Ms Griffiths said while awareness to support parents caring for babies in NICU was increasing, we still lagged well behind countries such as France,Denmark and Sweden. These countries allow parents to live in the hospital in family beds with their babies and have their babies on their chests – giving them control, something Rhian said she never felt.
Studies have shown in this environment babies go home at 35 weeks, instead of 40 weeks and parents have better psychosocial outcomes.
Ms Griffiths said: "A lot of our units are 30 years old and what was care giving 30 years ago is very different to now."
It requires a rethinking of facilities and midwives and obstetricians to be embedded into neo-natal unit. It is a very different way of caregiving which we are working towards, but we are not there yet.
Survival is different for everyone. We need to hold these parents while they are holding their baby," Ms Griffiths stated.
Miracle Babies Foundation founder, Melinda Cruz, said they advocate for family integrated care (FICARE), which provides parents in hospitals with everyday comforts and amenities, such as childcare facilities, parking permits and kitchen areas.
"It helps parents connect with their baby during the hospital stay and can improve weight gain, reduce infection, increase breastfeeding, reduce the length of the hospital stay and decrease parental distress," Ms Cruz said.
"After my experience with FICARE, I actually felt like I was the mum. It made us an integral part of my baby's care instead of being bystanders watching from the sidelines."
If you or anyone you know needs help, please contact the PANDA helpline - 1300 726 306, Gidget Foundation - 1300 851 758 or Lifeline Australia - 131 114.