It started with a slow ache that crept its way through her body.
Soon Denise was shaking uncontrollably as her temperature spiked.
The heavily-pregnant Sydney mum did exactly what she was supposed to do and went straight to the hospital.
“Mat and I were concerned about baby Julian,” Denise shared on Facebook.
“I went to the hospital to have the baby checked and myself.
“They did blood tests and urine tests and everything came back OK.
“The baby was fine. I was discharged and told to rest and take something to control any fever.”
“We had no idea”
Denise felt better within a few days and went back to preparing for the arrival of her little boy.
She had no idea that the virus was still active in her body – making its way to little Julian.
“Newborns have very little immunity and rely on their mother’s immunity to pass onto them, and this takes time,” Denise said.
“Julian didn’t get any immunity from me because it was too late in my pregnancy for the immunity to pass through the placenta to him.
“Little did we know that this evil virus had been transferred to Julian.”
“I didn’t have a good feeling”
When Julian arrived just over a week later, he seemed to be perfectly healthy.
Although he was a little grizzly and slow to feed – doctors quickly reassured Denise that this was normal for newborns.
“Deep down inside I didn’t have a good feeling,” Denise said.
“He was a bit jaundiced they said, but his jaundice count was low.
“On day four we were discharged, happy to get home and start enjoying our little baby boy.
“Audrey was so excited to have her baby brother come home!”
How could this be? Not in this day and age?”
By day six, Denise’s bad feeling had magnified as Julian became more lethargic and stopped feeding.
“We knew something was not right,” she said.
“We rushed to our local hospital emergency ward and they started working on him, perplexed that nothing they were doing was working.
“He was bleeding severely internally with signs of unexplainable liver failure.
“We got airlifted to Westmead Children’s Hospital to the Infant ICU Grace Ward.
“The doctor immediately recognised what Julian had a strain of Enterovirus called Echovirus 9. Rarely contracted. Deadly to infants. No cure. No drugs that can save him.
“Those words were unbelievable to hear. How could this be? Not in this day and age?”
“The most unimaginable decision”
Even so, doctors worked tirelessly to try to save Julian for the next five hours.
But tragically the newborn developed bleeding on his brain which left him brain dead.
“Mat and I then had to make the most unimaginable decision to have our son taken off life support,” Denise said.
“Julian fought all the way and didn’t give up.
“The bravest little soul one could imagine.
“But Julian died in our arms a little while later.”
“We would have taken any chance”
It seemed incomprehensible to Denise that she had never even heard of the virus.
“Pregnant woman gets told to not eat shellfish, soft cheese, drink alcohol, getting the whooping cough vaccine,” she said.
“Not at any point do they tell you ‘hey, if you present with these type of flu-like symptoms you could be infected with Enterovirus and it kills your baby’.
“They don’t test for it. A simple swab test could have been done and perhaps then my doctor and I could have made an informed decision to keep Julian in utero for as long as we could to give him a chance to receive the smallest bit of immunity.
“Even if it represented an extra 1 per cent chance of life for him, we would have taken it – and we believe every other mother or father would do the same.”
“Please contact us. We need you”
It’s for this reason that Denise has decided to share her story – hoping that by raising awareness she can help other parents avoid the same agonising loss.
“Mat and I want to stop this happening to another baby,” she said.
“We are working together with our doctors to raise awareness around Enterovirus and the dangers of contracting this during later pregnancy.
“We need data, and we need other parents to come forward so that we can present this to the medical community and begin making progress.
“If anybody out there has been affected by this or knows someone who has. PLEASE contact us on Facebook. We need you.”
What you need to know about enterovirus
- There are many strains of Enterovirus that can cause everything from viral conjunctivitis to hand, foot and mouth disease, viral meningitis and severe respiratory illness
- Symptoms include fever, a runny nose and cough, skin rashes, mouth blisters and muscle aches
- Enterovirus strains are normally spread through close contact with an infected person
- Avoid sharing cups, towels, toothbrushes, clothing and eating utensils with infected people
- Make sure to always wash your hands with soap and water after going to the toilet, before eating, after wiping noses and after changing nappies or soiled clothing
- Consult your doctor if you are concerned that you or your family may have contracted an enterovirus strain
Source: NSW Health
*This story is from our archives.
This article was republished with permission from KidSpot.
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