'I'm a nurse, but I missed the first signs of RSV in my newborn'

“When they tried to take her off oxygen, her levels would drop. We discovered she was actually forgetting to breathe." Warning: Distressing content.

Winter was just six weeks into her life when her little world turned completely upside down. 

Her mum, Deanne, noticed the newborn had a slight runny nose and cough, which she put down to a "normal cold".

“I thought it was just a normal cold that she had. I just kind of let her be,” Deanne told Kidspot.  

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"She was blue, she was limp"

What the Adelaide mum didn’t know was that her daughter was at the beginning of a long, confronting nightmare.  

Despite being a nurse, Deanne says she missed the early red flags of RSV, (respiratory syncytial virus is a disease that causes infection in the lungs and airways. Young children can develop serious breathing and feeding complications.)

“I had actually only heard of RSV in passing conversation. I hadn't actually looked after anyone with RSV,” she explained. 

Winter began refusing full feeds and coughing during her sleep. Her condition quickly declined to drowsiness, less wet nappies and experiencing difficulty breathing. 

Deanne decided to take Winter to hospital. When she arrived she was taken to a resuscitation bay and administered high flow oxygen. 

“She was just using all her energy to breathe by that point. She needed nasogastric feeding, because she was just too congested and too weak to actually suck from a bottle." 

Initially, Winter was discharged after 24 hours. She returned six hours later. 

“She needed to go back on the high flow oxygen, because she was pretty much blue. She was blue, she was limp. If I hadn't taken Winter back into the hospital, who knows what would have happened?” 

Winter remained there for one week, continuing to require oxygen and the feeding tube. 

“Every time they tried to take her off oxygen she would drop her oxygen levels. We found out that overnight she was actually forgetting to breathe,” Deanne said. 

“It was a very scary time.”  

When Winter arrived at hospital she was administered high flow oxygen to treat RSV. Image: Supplied

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"She actually lost her voice from crying."

The odds had already been stacked against the baby to begin with. She’d had COVID just weeks prior and her start to life was challenging. 

“She was born prematurely. Obviously her lungs would have been already trying to catch up with development,” the mum revealed. 

It was heartbreaking for Deanne to helplessly watch her baby struggle. 

“She actually lost her voice from crying. That just made it so much worse,” the mum recalled.

“I couldn't do anything to soothe her to take her pain away.” 

At home, Deanne had to also manage her very confused two-year-old son. He had to stay with his grandmother in the midst of adjusting to his role as a big brother.

“He had no idea what was happening with his baby sister. Like we hadn't been home from the hospital that long,” she said.  

When it came to being discharged, it signaled only the beginning of another the uphill fight. 

Little Winter spent one week in hospital fighting RSV. Image: Supplied

"I’m still not back at work because she’s still feeling the effects of RSV"

The RSV led to her developing bronchiolitis once home, but the long term impact is still ongoing. Even now at 13-months-old, Winter is still on the road to a full recovery.  

“She still has a chronic cough, which sounds quite bad. She's also got a rattly chest which you'll hear as soon as she starts to move around because she's crawling. It scares a few people,” Deanne revealed.  

Currently she sees a respiratory specialist, an ENT, a speech pathologist and she is about to undergo a sleep study. She also requires an inhaler and experiences issues with swallowing and choking. 

The respiratory specialist believes Winter may have chronic obstructive pulmonary disease as a long term symptom from RSV. She may soon need to have surgery to secure her airway. 

It’s all snowballed into a very heavy financial burden for the single mum. 

“I have spent thousands of dollars on different specialists privately for her, including an interstate trip and being only on Centrelink. It's taken a huge toll on myself being a single parent,” she said. 

“I also had to give up my nursing job, because my work hours didn’t work with all Winter's appointments. I’m still not back at work because she’s still feeling the effects of RSV and needing treatment.  I don’t qualify for a carers pension either for her.”  

Deanne believes education around RSV needs to be improved. Image: Supplied

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"RSV is not just a cold"

Now, she wants other parents to look out for what she missed. She urges them to trust their gut and when to seek medical attention.

Strict boundaries are also something she wishes she'd implemented sooner. 

“I was really lenient on letting people come around my baby that were sick. I should have been more strict,” she shared. 

She also believes that education about the virus needs to improve, as "This isn’t just another cold".

“When it happened to my daughter, it made me angry. Hearing that people were still saying it's just a cold when I'm watching her struggle to breathe,” she said. 

Deanne has provided Kidspot with permission to publish her story, images and videos of Winter. She hopes that by sharing she will improve awareness and prevent other parents from experiencing her heartache.  

Originally published as 'I'm a nurse, but I missed the first signs of RSV in my newborn'