Evelyn Andrews and siblings Tayla and Tom Sladdin owe their lives to the Royal Children's Hospital as it marks its annual Good Friday Appeal

For weeks Evelyn's life was in the balance in the Royal Children's Hospital's neonatal intensive care unit and at times her parents Jennie and Bryce did not think they would bring their daughter home.

The couple had learned at their 20 week scan that when Evelyn was born she was likely to have a form of dwarfism, but they did not know she also had Pierre Robin Sequence and Stickler Syndrome as well.

It was the PRS that caused immediate concern for Evelyn. Babies with PRS are born with a small lower jaw, difficulty breathing and an internal cleft palate and it took doctors at St John of God Hospital some time to get Evelyn breathing after birth.

"She was born and I held her for less than a minute and kept saying she's not breathing there's something wrong. They kept trying to rub and stimulate her but it wasn't working. She made an odd noise and they took her from me and tried to resuscitate her at the end of the bed but it wasn't working and they all ran out of the room so I told my husband to go with her," Ms Andrews said.

For two hours in the middle of the night, without having a phone or a call bell at hand, the new mum thought her baby had died because no one returned to the room to let her know what had happened.

Eventually nursing staff came back and said she could see her baby and the couple held their daughter's tiny hand while awaiting a specialist Royal Children's Hospital team.

Within hours the Royal Children's Hospital Paediatric Infant Perinatal Emergency Retrieval team had transferred Evelyn to Melbourne and just six hours after giving birth, Ms Andrews discharged herself from hospital and was taken to Melbourne.

What followed was surgeries, infections, and an epic fight for life.

"Everything that could have gone wrong, did," Ms Andrews said. "She became septic, got infections, and was ventilated for a very long time which was unexpected."

Evelyn had her first surgery at a week old, a jaw distraction in which her jaw was cut and a device implanted that would move her jaw 0.4mm every four hours until it was far enough forward to stop blocking her airway.

That whole time she was kept in a medically induced coma. During those weeks doctors also suspected something else was at play, and eventually Stickler Syndrome - a full-body collagen disorder which affects the collagen and tissues around Evelyn's lungs - was diagnosed.

It meant Evelyn had to be ventilated differently to other babies, with an oscillating mode of ventilation giving her 280 breaths per minute to vibrate her chest open.

"We couldn't stay in the room for very long because it was so shocking to sit and listen to it but the doctors said it's normal for parents not to sit very long because it's so confronting," Ms Andrews said.

"It was a very scary time because we didn't know if she was going to make it out."

What made the ordeal even more difficult was the fact it occurred during COVID lockdowns meaning the normal support networks were not available to the couple, and only one parent could be in the room with Evelyn at a time.

After arriving in Melbourne they were given a room at Ronald McDonald House near the hospital, but friends and family could not travel to be with them and only one person was allowed to use communal areas at a time.

"Now we sort of laugh it off ... but at the time we were just in survival mode. It was extra hard because even in Ronald McDonald House the communal areas were closed so you had to wait for someone to finish using the kitchen before you could ... we've been back since for other surgeries and the community they create in there, making dinners together, we didn't have that."

After her initial stay, Evelyn has had three further surgeries at the Royal Children's Hospital and has at least another one to come, although with the combination of conditions she has, the future is unclear.

With Evelyn's second birthday looming in May, it's hard to see the hurdles she's had to overcome in her early life.

"She is such a character. Her grandparents have a little farm out in Ross Creek and she always loves going to see the sheep, horses, running around the paddock in her gumboots - she doesn't let anything stop her," Ms Andrews said.

"She has a hearing aid because of hearing loss from the Stickler Syndrome, and her speech is a bit behind but other than that you wouldn't know anything else has happened."

Ms Andrews admits to having "classic mum moments" where she sees Evelyn doing something and gets emotional.

"It's easier to talk about now because we see how good she is and how well she's doing, but I remember us sitting in the hospital room thinking we would never get her home, thinking we would never walk out with our daughter," she said.

"Doctors were up front and honest so we knew what to expect and there were a couple of weeks we were not expecting her to make it through."

The care and support from the Royal Children's Hospital, and a groundswell of support from their friends and the Ballarat community, helped the family through. And since then the family has expanded with the arrival of Aubrey and a third on the way.

While the couple were in Melbourne with Evelyn, friends and colleagues from the emergency department at Ballarat Base Hospital remodelled their backyard and house and created a roster to cook and deliver meals for the week to leave at their door, as well as creating a GoFundMe campaign.

To donate to the Royal Children's Hospital Good Friday Appeal, visit www.goodfridayappeal.com.au

Tayla and Tom Sladdin are regulars at the Royal Children's Hospital, having had countless admissions and appointments related to cystic fibrosis.

In fact mum Jess Praag says that without the RCH, she wouldn't have her children at all.

Tayla, 12, was diagnosed with cystic fibrosis through the heel prick test after she was born, and Tom, 10, was diagnosed before he was born.

Both children take up to 30 tablets to support their lung, digestive and general health and complete at least an hour of physiotherapy each day. They also visit the hospital at least four times a year for the cystic fibrosis clinic, with visits to other specialists on top of that and an annual hospital admission for a "tune up" that can last two or three weeks.

And that's just when they are healthy.

When they are sick there's more treatment and often unplanned admissions to hospital.

Cystic fibrosis causes thick, sticky mucus in the lungs, airways and digestive system which impacts the digestive functions of the pancreas and traps bacteria in the lungs, resulting in ongoing infections and irreversible damage.

From birth, people with CF have constant medical treatments and physiotherapy.

Tayla and Tom also play sport to keep their lungs as healthy as possible, with the family coordinating netball, football and basketball training and games in to their schedule.

"At the moment they are probably at the Royal Children's Hospital once a year to tune up, compared to when they were going in up to three or four times a year," Ms Praag said.

"You get one child not well, and it used to happen that we would get home with one and have to go back with the other. They pass things to each other so we would be down there all the time."

Tayla has a more severe form of the disease than her brother and has undergone major abdominal surgery and required a feeding tube for much of her life.

"Tayla really had a rough beginning to her life and pretty much had regular hospital admissions every two or three months with digestive problems as well as lung issues so she was really quite sick ... and her growth was really affected," Ms Praag said.

Tayla started on a new drug, Trikafta about two years ago which has been "life changing" according to her mother, and her lung function has improved.

Despite the drug being approved on the pharmaceutical benefits scheme for six to 11 year olds, Tom is still waiting because the PBS and drug company cannot come to agreement over the cost.

"These poor kids are getting sicker," Ms Praag said. "His lung damage has got worse in the past 18 months he's been waiting for it."

IN OTHER NEWS

Ms Praag said with new medications, research and improvements she had seen a big change in the model of care for children with CF over their years of involvement with the Royal Children's Hospital.

"Without RCH the kids wouldn't be here, especially Tayla," she said.

Ms Praag called on regional families to get behind the annual Royal Children's Hospital Good Friday Appeal.

"You never know what's around the corner," she said. "Give generously because the hospital is there and it's a great support for regional families as well as metropolitan areas."

The family are also involved in the Ballarat Cystic Fibrosis Incorporated group who support families living with the disease.

To donate to the Good Friday Appeal visit goodfridayappeal.com.au

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