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'We prepared to say our final goodbyes': How a common virus a mother picked up while pregnant led to her baby boy being unable to walk or talk

Daily Mail logo Daily Mail 6/07/2019 Matilda Rudd

a woman standing in front of a wedding cake: Pamela Rogers (pictured) remembers taking seven days off work when she was 15 weeks pregnant

Pamela Rogers (pictured) remembers taking seven days off work when she was 15 weeks pregnant
© Provided by Associated Newspapers Limited

Pamela Rogers remembers taking seven days off work when she was 15 weeks pregnant.

The 31-year-old from Canberra was feeling extremely tired and run down - not unusual for someone who is pregnant with their firstborn - and decided to check in with a doctor just in case.

They told her that growing a human is 'hard work' and she should 'be kind to herself'. A week off would have her feeling better. 

But that week is thought to be the time she contracted a common virus called Congenital Cytomegalovirus (CMV), which would change the course of her unborn son's life forever. 

'At 26 weeks I was sent to the hospital for scans and monitoring because I was measuring small,' Pam told Femail.

'A follow up at 28 weeks uncovered an abnormality in Christopher's brain. After various scans, screens and tests including a foetal MRI at 31 weeks, we were given the diagnosis of Neuronal Migration Disorder (brain malformation). 

'His prognosis was extremely bleak and we spent the next 6.5 weeks preparing to say our final goodbyes to our precious babe.' 

Doctors were fairly certain that CMV was the cause of her son's disabilities but a test when Christopher was two days old confirmed the news.

The virus affected his lungs, heart, liver, kidneys, spleen, hearing, vision, bone marrow and most severely, his brain.

Christopher is fed through a feeding tube with an additional stoma to control his bowel movements.  

'He is non verbal, non mobile, has limited head and torso control and relies on us for absolutely everything,' Pam said.

'He requires daily medications and regular Botox treatments to manage pain and seizures.'

Christopher has regular physiotherapy, hydrotherapy, occupational therapy and speech therapy, attending at least one session a week. 

'He wears a hearing aid and various splints and supports. He predominantly uses a wheelchair but also has a standing frame and supported seating for alternative positioning and a special sleep system for bed.' 

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.

CMV can be passed on to a pregnant mother by saliva and poor hygiene practices, making it very hard to detect and avoid.

'Had we been given the opportunity to make an informed decision, we would have been more diligent and mindful around hand washing and basic hygiene,' Pam said.

She and her husband Tom, 25, have two girls, including two-year-old Charlotte and one-year-old Matilda, who are a huge support of their older brother. 

'My favourite thing ever is watching his sisters interact with him,' Pam said. 

'Our lives are so much better for having him. We know that he was sent to us for a reason - we needed him as much as he needed us.'

The Rogers family are sharing their story and raising awareness about this serious virus for one reason. 

'All we want is to prevent families from having the same horrendously difficult conversations we have had about our dear boys life,' she said. 

'All we hope for our boy is that he continues to express himself through his beautiful smile. 

'That he continues to change the lives of those around him for the better. That he is able to live life at the highest quality - happy and comfortable - surrounded by people who adore him.'

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