Enterovirus: Our Baby Died From A Common Virus Most People Don't Know About
Baby Billie only lived for 11 days, now her parents are fighting to stop anyone else going through this heartbreak.
What do you know about enterovirus?
Eleven days after beautiful baby Billie was born, her parents cuddled their daughter as she took her last breath. It’s a story of heartbreak that mum Candice wants to share in the hope that more people will understand the devastation of the little-understood and rare virus that took her life…
Sometimes I still can’t believe she is gone. Billie was born via emergency C-section at 39 weeks, as the obstetrician said her heart wasn’t doing what it should be. She was a chubby little baby, who looked just like her big sister Aubrey.
The first night she had a low temperature, so I cuddled her all night, she also looked a little jaundiced. After three nights, the paediatrician said she was ok to go home, but when we got her there, she wasn’t feeding or sleeping well. I was starting to get worried. The nurse came two days later for a home check and she was whisked back to hospital – because she was very underweight and badly jaundiced.
We battled with the unknown – we didn’t know what would happen next
After tests, the doctor said she had Meningitis – I thought, this is quite serious. We were told there could be potential learning delays or disability. But when more test results came back, we discovered it was Enterovirus, a virus that usually infects the gut. The doctor said, “that’s the best possible outcome, we know this virus, she should be fine.” There was a slight chance the virus could go to her heart, but we were told that was rare.
I felt so relieved, if the rest of the tests came back clear, we could take her home in two days. That morning she wouldn’t take her bottle, she’d been feeding really well until that point. She finally drank it, then vomited everywhere; she’d not vomited before. They said we could take her home, but I said, “no I’m not comfortable with that, I want to wait a little longer.” We were already nervous about taking her home after what had happened. After she vomited again after her next feed, they decided to delay discharge until the following day.
She’d gone downhill, so doctors wanted to put in a nasogastric tube. I’d been trying to hold it together until that point. I cuddled her before they put the tube in, and I just broke down, I cried and cried. When the nurse was reconnecting all the monitors, she couldn’t get a read and that’s when the emergency call was made.
Nurses and doctors ran into the room when the alarm sounded
Medical staff crowded around her. I was panicking and I felt so sick. I remember saying to my sister-in-law, “what if she dies?” But at the same time, I didn’t think it was going to happen, I had to believe that Billie was going to be ok.
The paediatrician told us that it appeared the virus had gone to Billie’s heart, and they need to transport her to Melbourne. But they couldn’t stabilise her to move her.
My husband Davie told me later that they were doing heart compressions on our baby. Even when a paediatrician said to us, “you need to prepare yourselves, Billie probably won’t survive this,” I kept thinking, she has to be fine, she just has to be.
Billie died at 2.00am the next morning from Enterovirus Myocarditis. She’d been through so much. Even as I held her at the end, part of me didn’t believe it would happen, it was so painful watching her life slip away.
We need more community awareness about Enterovirus
We want to raise awareness in order to improve screening and testing, so there can be more early intervention and understanding both in the wider community and in the medical community.
Aubrey had been sick in the week before Billie was born, and they now believe I contracted it from Aubrey and passed it to Billie in utero. Leading up to the delivery, I wasn’t feeling well, but when you are pregnant and have a toddler running around, you just put it down to tiredness.
After Billie died, we found out she had a severe strain – Coxsackievirus B. We now know, that if a baby has Enterovirus, early intervention is crucial as while there is no guarantee, supportive treatment is available. In adults and children, symptoms are usually only mild, but it can be deadly to babies.
We know there are many types of Enterovirus, that can cause well-known diseases like Polio, but now that’s been eradicated in Australia, funding isn’t being channelled into research for other types of Enteroviruses.
We are helping to raise money for important research to save lives
The ‘All for Billie’ campaign aims to raise $30,000 to fund Enterovirus research through The Royal Melbourne Hospital Foundation. Led by Associate Professor Bruce Thorley, the project will increase understanding of Enterovirus infections.
We call peonies Billie’s flowers, they are how we remember Billie and celebrate her life. The ‘All for Billie’ logo includes peonies.
I have spoken to other mums who have lost their babies to Enterovirus, I don’t want another parent to go through this heartbreak. If everyone who reads this just donates even $1, or shares the story with others, we could reach our target.
Enterovirus infections can initially present with similar symptoms to other microorganisms – such as fever, a runny nose, cough, skin rash, mouth blisters or muscle aches – but progress to more severe illness if it infects critical sites, such as the heart or spinal cord.
This article was first published in KidSpot and republished on theAsianparent with permission.