Skye was born at St George Hospital in Kogarah, Sydney, at 23 weeks gestation, weighing just 635g. From the start, her mum Rebekah says, "I wasn’t given much hope as to her survival – or her quality of life even if she did survive."
In the first few hours of her life, Skye was transferred to NICU at the Royal Prince Alfred Hospital in Camperdown. Because of her early arrival, Skye had a long list of health problems, including chronic lung disease, lung infections, a minor brain bleed and retinopathy of prematurity in both eyes. To make matters worse, her small veins made access for life-saving treatment extremely difficult, so she needed a central line inserted to make administering medicine drugs easier.
Being discharged from hospital without her baby was heartbreaking for Rebekah. "When I was told I had to go home, I was devastated. I missed my little girl at home and wanted to get back to her as soon as I could,” she says.
"I expressed my milk for her six to eight times a day and continued this through her long stay in hospital. It was the one thing that kept me bound to my tiny, miracle, baby girl and kept up my morale through the entire ordeal.”
Already a mum of two, the following four months were incredibly draining for Rebekah. “Back and forth from home, expressing, getting my five-year-old to and from preschool, spending hours by Skye's bed, travelling to and from Tamworth to pick my son up for the holidays, trying to sleep, commuting by public transport … it was unbelievably stressful.”
I was told that I would lose her. I couldn't believe after all that she had been through, she may not make it through this
After four and a half months of around-the-clock care, Skye was transferred back to St George hospital – and 10 days later, she was given the all-clear to head home at last. Her discharge weight, almost five months after her birth, was 2.41kg.
Skye continued to grow and seemed healthy over the next few months. Then Klaire, Skye's five-year-old sister, got the flu. It spread throughout the family – and then Skye got the sniffles too.
"Skye wasn't sleeping so well, but I put it down to a stuffy nose. On Monday, I took Klaire to preschool and went to see my GP to make sure everything was okay. My GP gave me some antibiotics for Skye and told me we would all be fine. But by the next morning, Skye was hardly moving. She had lost all muscle tone.
“We took her straight to the emergency room and within two hours she was intubated and transferred to Sydney Children's hospital for specialised treatment. She was ventilated and heavily medicated, so she couldn't move. I was beside myself.”
Doctors explained that Skye had respiratory syncytial virus (RSV). It’s a common virus that causes cold-like symptoms for most people, but for prematurely born and seriously ill infants, it’s a serious health issue.
After all they’d been through, Skye was facing another major threat to her life. “I was told that I would lose her. I couldn't believe after all that she had been through, she may not make it through this," Rebekah remembers.
Skye was put onto a high frequency ventilator to try to loosen the infection in her lungs. After a week and seeing no improvement, the doctors suggested ECMO – a cardiac and respiratory support machine – to try and increase her chances of survival. But when told it may only increase her chances by 1 or 2 percent and could leave her severely brain damaged, Rebekah refused.
“Life had pulled a fast one on us. I spent the majority of my day next to Skye's bed. I did plenty of crying," she says.
Rebekah clung to the hope that her little girl was strong enough to pull through. "No matter what, I kept expressing milk for her and held strong to my belief that she was such a little fighter, that she would get through this, as she had overcome so much already in her short life."
The staff told Rebekah to prepare for at least a three month stay at the hospital, meaning Skye would miss her first birthday and Christmas at home.
But again, Skye surprised the staff with her will to live. On day 20 of being on high frequency ventilation, the doctor tried Skye on a normal ventilator, and just over a week later she was out of ICU and on the ward.
By week six of her stay, Skye came off the drip, was back to breastfeeding and solids, and off oxygen. She was home before November, in time for her first birthday.
Rebekah is in awe of her little fighter. “Skye is a miracle. She has overcome things that most adults couldn't survive. Skye is bright-eyed and bushy-tailed every day. She knows she’s loved and it is a rarity to see her without a smile, followed by a cheeky giggle.
“My perspective on life has completely changed. I am much stronger and wiser as a result of experiencing the amazing world of premature babies. To all the staff members of the hospitals who have made it possible for Skye to be with us today, we are eternally grateful to you."
For more information on National Premmie Day and RSV risks, symptoms and prevention, visit www.prembaby.org.au.
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