'He didn’t crawl until 16 months old... I'd never heard of it'

“Could this virus take my son’s hearing? Could it do more damage to his brain? It doesn’t affect all children, but when it does it can be fatal."

Alexis had just started her maternity leave when she noticed her unborn son had lower foetal movements.

She took herself to hospital where her son was diagnosed with intrauterine growth restriction, meaning her baby measured below the 10th percentile in weight.

Little did Alexis know this would be the first sign in an ordeal that has left her son, Anakin, with low muscle tone, global developmental delays, and absence seizures.

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“(When Anakin was born), they kept him in the NICU only to gain weight,” Alexis told Kidspot.

“He had a yellow tinge which they thought was jaundice, but when they did the heel prick every day it would come back normal.

“They said they had to run some tests before sending us home, and told us it would more than likely come back negative for the illnesses they were testing for.”

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Alexis while she was pregnant with her son Anakin. Picture: Supplied

"I'd never heard of CMV"

It didn’t. When Anakin was about a month old, he was diagnosed with Cytomegalovirus (CMV), a virus in the herpes family that can be extremely dangerous to newborns.

“It was the first time I’d heard of CMV in my entire life,” Alexis said.

“The doctor told me it wasn’t something they tested for routinely, but because my son was born ‘asymptomatic’ the virus shouldn’t cause any issues.

“The only thing we needed to look out for was hearing loss, and he needed regular hearing tests.”

RELATED: Mum contracts CMV while pregnant which causes son's disabilities

Anakin weight about two kilos when he was born, so he spent time in the NICU to encourage weight gain. Picture: Supplied

"He didn't crawl until 16 months"

The hospital also did ultrasounds on Anakin’s eyes and brain, but both came back “normal and fine”, so he was allowed to return home.

It wasn’t long before Alexis started to see the impact CMV would have on her son.

“It’s given him low muscle tone, global developmental delays, and a couple of absence seizures,” she said.

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“He also had delayed myelination in the brain, and enlarged brain ventricles.

“He didn’t crawl until about 16 months old, and he didn’t start sitting independently until he was about 18 months.

“He had an extreme head lag until about 17 months and he still cannot walk, talk, or stand independently.

“He is now 20 months old and just started to pull himself up to stand with a lot of effort.”

RELATED: WA mum loses baby to CMV at 21 weeks pregnant

Anakin has suffered from global developmental delay after his diagnosis with CMV. Picture: Supplied

"We're incredibly proud of him"

Thankfully, Alexis was able to get Anakin into early intervention therapies through the NDIS, and said she’d seen “great progress”.

“We’re incredibly proud of him,” she said.

“He’s had MRIs, lumbar punctures, blood tests, EEGs, and they’ve all pointed to CMV.

“We have an incredible paediatrician who I couldn’t speak higher of. He has gone above and beyond for my son and hasn’t left a single stone unturned.”

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Thankfully, early intervention therapies have done wonders for Anakin. Picture: Supplied

"I've seen so many families affected by this"

Despite her son’s progress, Alexis recognises the stress she’s been under during his short life.

“It has its ups and downs,” she said.

“There’s still a lot of unknowns about CMV and how it affects each child, and it can be really emotional at times.

“Could this virus take my son’s hearing? Could this virus do more damage to his brain? I just don’t know what this virus is capable of.

“I’ve seen so many families affected by this virus, and it’s both devastating and fatal.

“I really want to spread awareness about CMV and ensure women who are wanting to start families will educate themselves.

“It doesn’t affect all children, but when it does it can be fatal.

“Ask your medical team about CMV if you are pregnant, and if your child fails their newborn hearing test, ask them to test for CMV again.”

Originally published as 'He didn’t crawl until 16 months old... I'd never heard of it'