Mother’s heartbreaking warning about CMV virus

Mother's heartbreaking warning about CMV virus
Posted on Thu 13 Jun 2019

CPA client Bree and her family raise awareness of CMV in this article recently published by Matilda Rudd for Daily Mail Australia. 

'I wish I'd used my own cup': Mother's heartbreaking warning after a common virus she believes she caught from her toddler while pregnant left her baby son severely disabled and unable to walk or talk. 

  • Mother-of-two Bree Pennie gave birth to her son Dax almost five years ago

  • She contracted Cytomegalovirus (CMV) when she was 20 weeks pregnant 

  • Dax cannot walk, talk, use the toilet on his own or feed himself as a result

  • She fears she may have contracted the virus from her eldest daughter 

 

Mother-of-two Bree Pennie wonders if her young son would be able to walk if she hadn't sucked on her older daughter's dummy to clean it.

Maybe if she didn't drink from Dylan's bottle her little brother Dax would still be able to talk.

Or if she made another slice of toast instead of finishing off her eldest's breakfast maybe her youngest would be able to feed himself today.

And, just maybe, if she turned down those beautiful but sloppy toddler kisses would life be different?

 

Bree doesn't know for certain how she contracted a devastating but common virus while she was 20 weeks pregnant with Dax leaving him severely disabled.

The 36-year-old from Burrill Lake, NSW may have contracted Cytomegalovirus from her older daughter Dylan but says she will carry a 'burden of guilt' forever.

Bree is now issuing a warning to women, especially those with young children, to take extra caution while pregnant.

'I can’t be certain if I contracted it from my daughter, we’ve never had her tested,' she told FEMAIL.

'We felt I already carry a burden that I passed on the virus to Dax, that burden didn’t need to be shared.'

'She will know in time her CMV status and if she has had past exposure. However, it is likely this is where I contracted CMV.'

The virus is most contagious in children under the age of two and Dylan was 18 months at the time it struck.

'She very social in playgroups, crèche and Kindergym, and later in my pregnancy she attended childcare,' Bree said.

'She was often unwell, as most children this age are, with a snotty nose.'

The virus left her son, who is now four, with several lasting disabilities and unable walk, talk, feed himself or use the toilet on his own.

 

 

'We have a beautiful boy, he has a smile that will melt your heart, a laugh which is infectious and determination that will move a mountain,' she said. 'But the reality is, his needs are high, he is getting bigger and our backs are getting weaker.'

Bree had no prior exposure to CMV and therefore had no immunity to the virus.

'Knowing now what I know there are many things I would have done differently,' she said.

'I would have made myself a fresh piece of toast instead of finishing off my toddler's leftovers as I was running out the door.

'I would have asked for cheek kisses instead of sloppy lip kisses from my sweet little girl.'

 

What is Cytomegalovirus (CMV)? 

  • Congenital Cytomegalovirus is the leading cause of viral birth defects in Australia.
  • Studies in Australia have shown that out of 1,000 live births, about six infants will have a Congenital CMV infection and one or two of those six infants (about 1 in 1000 infants overall) will have permanent disabilities of varying degrees. 
  • These can include hearing loss, vision loss, small head size, cerebral palsy, developmental delay or intellectual disability, and in rare cases, death. 
  • Sometimes, the virus may reactivate while a woman is pregnant but reactivation does not usually cause problems to the woman or her unborn baby.

How do you prevent it? 

* Wash hands often with soap and running water for at least 15 seconds and dry them thoroughly. This should be done especially after close contact with young children, changing nappies, blowing noses, feeding a young child, and handling children's toys, dummies/soothers.

* Do not share food, drinks, eating utensils or toothbrushes with young children.

* Avoid contact with saliva when kissing a child.

* Use simple detergent and water to clean toys, counter tops and other surfaces that come into contact with children’s urine, mucous or saliva.

'I would have packed more spare dummies instead of sucking the dirt off after it was dropped on the ground.

'Funnily enough it never dawned on me the germs in my daughter's mouth were potentially more harmful than the dirt on the ground.

'I would get a fresh cup if I was unsure which one was mine and I would wash my hands more often.'

To reduce a pregnant woman's risk of exposure doctors recommend good hygiene practices be put into place early - like washing your hands thoroughly after cleaning up any food spills or nappies on children.

Bree had no symptoms other than feeling a 'little run down' but felt like that was a common complaint from women caring for a toddler while pregnant.

But now that she knows the possible complications, she would recommend women be aware of the risks. 

'Unfortunately I wasn't CMV aware and I have a burden of guilt that I will carry forever, which is why it pains me to look at my 20-week ultrasound picture,' she said.

'A picture of a perfectly developing child, a picture that in the following weeks would change all because of a common virus.'

While life is busy there are everyday improvements in Dax's condition that keep the family hopeful. 

'He has regular physiotherapy, personal training, occupational therapy, speech therapy, hydrotherapy, and will soon start a transition to school program,' she said.

'So whilst he can't walk independently, he is taking steps in his walker, he often rides his modified bike, he is not feeding himself but reaching and grasping his drink bottle, he might not speak but he listens and communicates in his own unique way.'

The family use their Facebook page The Double D's take on CMV to update other families about Dax's condition. 

You can learn more at the Congenital Cytomegalovirus Association of Australia's website and Facebook page.

Find out more about how to reduce your risk of CMV infection from CPA's website. 

Cerebral Palsy Alliance Research Foundation (CPARF) is a proud World Cerebral Palsy Day partner. 

Cerebral Palsy Alliance Research Foundation (CPARF) is proud to have Nike athlete Justin Gallegos as its 2019 STEPtember Ambassador.