Family raises CMV awareness after son was affected by virus

Family raises CMV awareness after son was affected by virus
Posted on Fri 1 Jun 2018

When Pam and Tom Rogers discovered they were going to have their first child they were over the moon. They began planning for the new addition to their family - but during the pregnancy that they learnt their little man was going to face some challenges. And it all had to do with a common virus, cytomegalovirus (CMV), that mum Pam had unknowingly picked up during her pregnancy.

At 26 weeks Pam was at a routine midwife check-up when they discovered that her ‘bump’ was measuring small at just 19cms. The midwife reassured her that it may be nothing, but given that Pam and her husband were tall, it was worth a trip to the hospital for monitoring.

With a little worry in her heart, Pam went to the hospital. She underwent a raft of tests and one of the scans showed the baby was small. Just two weeks later Tom and Pam were back at the hospital for further monitoring and scans. This is when doctors found an abnormality in their unborn baby’s brain.

Pam says the next few weeks were full of tests, scans and an MRI of the baby’s brain. “Then on 10 February in 2014, we received a call from the hospital asking us to come in to discuss the results.” The pair went to the hospital feeling nervous and scared about what they would be told.

A CMV diagnosis

“We were taken into a room with a comfortable lounge and a coffee table that had a box of tissues sitting in the middle. Over the next hour or so, it was explained that our baby’s brain hadn’t developed properly,” Pam recalls. “It was underdeveloped and misshapen. The full impact of what this meant was unknown, but the damage was severe. Chances of his survival were slim.”

Pam doesn’t remember much of the conversation, just the devastation of hearing that her beloved child was in trouble. The couple went home and shared the news with close family members.

The next day the couple took their parents back to the hospital for a meeting with the team of doctors to discuss what was happening. It was during this conversation that they first heard of CMV.

“Those three little letters had changed our lives. CMV... A common virus I had picked up early in my pregnancy. I’d had a week off work, but it had been put down to being a little stressed and tired – growing a human is hard work! Unfortunately, it had crossed the placenta, attacking baby’s brain and subsequent development throughout the remainder of the pregnancy," Pam said.

Their miracle babe, Christopher Phillip, was born on 28 March, at almost 38 weeks. And he was breathing, much to their relief.

Christopher was given a series of tests and scans that revealed the virus had affected his liver, kidneys, spleen, heart, lungs, bone marrow and platelet count, ears, eyes and brain. Over the next 12 to 18 months, one by one, they received the diagnosis of congenital CMV, microcephaly, severe global developmental delays, cerebral palsy, epilepsy, unilateral hearing loss and cortical vision impairment. 

reducing the risk to mums-to-be and unborn babies is as easy as communicating a simple message – wash your hands, don’t share utensils, food or drink with toddlers and avoid contact with bodily fluids such as mucus and dribble.

Christopher surprises everyone

And in the years since, Christopher has continued to defy the odds and surprise everyone around him with his strength, determination, will to live and capacity to love. “His smile fills a room and he has the most amazing ability to bring sunshine to the gloomiest day,” Pam says. 

Pam and Tom had no idea what CMV was before and during the pregnancy so they are now working hard to raise awareness with the wider community.

“While we wouldn’t change our baby boy for anything, we want people to be aware of CMV. Little is known about CMV within the wider community, yet it is extremely common. More importantly, reducing the risk to mums-to-be and unborn babies is as easy as communicating a simple message – wash your hands, don’t share utensils, food or drink with toddlers and avoid contact with bodily fluids such as mucus and dribble. 

“If this simple message can prevent future families from having the heartbreaking conversations my husband and I have been forced to endure, then let’s spread the word,” says Pam.  

Thanks to the financial support of donors, Cerebral Palsy Alliance is running a CMV awareness campaign in conjunction with CMV Australia. You can help spread the word through social media. Go to the CPA Facebook page

To follow Christopher’s journey, follow the family on Facebook.

Disability activist and author Hannah Diviney talks about celebrating the community wide commitment to STEPtember, her excitment for the upcoming World CP Day and the endless possibilities of assistive technology in her column this month. 

Cerebral Palsy Alliance-backed disability tech startups PolySpine and ResusRight have both been awarded prizes at the 2022 Good Design Awards, Australia’s most prestigious showcase of innovative and creative design