Kissing your toddler is second nature to all mothers but for Melissa Howard, doing so while she was pregnant has now turned out to be the greatest regret of her life.
The 38-year-old nurse from Margaret River in Western Australia said she ‘must have’ contracted cytomegalovirus or CMV through kissing her first-born boy or sharing his food while she was pregnant.
The virus is passed by bodily fluids, including saliva, and has only mild symptoms so often goes undiagnosed and is relatively harmless – unless you are pregnant.
Then it can travel through your blood stream and infect your baby – often causing severe complications and leading to disabilities like Cerebral Palsy and deafness.
Melissa Howard with her husband Peter Joyce and their two sons, Noah and Huey
Huey, 5, has been unwell for most of his life – recently doctors linked his disabilities and general illness to CMV a usually harmless virus
‘We get told to watch out for so many things when we are pregnant but not this virus, which is everywhere,’ she said.
‘CMV stays in your body and when you are run down, like shingles and other Herpes viruses it reactivates and if you are pregnant it can spread to your baby.’
Melissa has admitted her lack of knowledge around the virus and it’s devastating effect on babies and has since read up on it – but says hospital staff need to do the same.
Signs something wasn’t right began at 27 weeks – she delivered her second son Huey at 34 weeks after stints in and out of hospital.
‘Throughout the pregnancy my body was screaming something was wrong – but doctors thought it was that our blood was not compatible.
‘He was born pretty unwell and needed a blood transfusion, we went straight to the NICU. He had a rash all over his body which screamed CMV but wasn’t tested for it,’ Melissa said.
Melissa must have picked up CMV while pregnant – it is typically spread through bodily fluids – she says she wouldn’t have kissed her toddler or shared his food if she had known
Huey’s link to CMV was picked up after he started losing his hearing – an MRI showed calcification of the brain and damaged white matter
If they had picked up on the warning signs earlier, especially while Huey was in utero, they could have destroyed the virus and stopped it from causing more harm.
‘For the first couple of years we were in and out of hospital a lot. He had pneumonia for the first three months but this was left untreated too so his left lung stopped working,’ she added.
Problems kept popping up for the youngster.
When he was four his hearing deteriorated quickly.
‘I asked why he was standing right next to a speaker and he told me he couldn’t hear out of that ear anymore.’
The family had MRIs done to see what was going on with his hearing and initially were happy to be told his ears were ‘pristine’.
Huey has been unwell since birth and showed many signs of CMV – his mum says if doctors had picked up on it then he may not have as many complications today
Melissa explained Huey has experiences seizures, had hearing loss and even had a lung stop working in his five years
Unfortunately the MRI did pick up problems.
‘The doctors said “We need to talk about his brain”,’ she said.
This made her heart sink and her stomach start to flip.
He said: ’35 percent white matter is destroyed – he has calcifications through the brain and you are going to have to see a neurologist.’
Since then the cheery five-year-old has lost most of the hearing in his left ear and some in his right.
The family are learning sign language together so they communicate with Huey when his hearing goes altogether.
Adding up all the problems Huey had encountered, the doctors diagnosed CMV as the culprit for the first time, and that made everything else fall into place.
For years he had been having regular seizures, problem with his gait and muscles.
‘He has got lots of things going on including a genetic DMNT1 variation – so rare it has never been seen before, so we are waiting to see if that does anything,’ she said.
Despite his challenges, Melissa said she is proud at how well her son is doing.
‘On paper he shouldn’t be eating, drinking, walking,’ she said.
The busy mum has taken up a FIFO nursing role since Huey was born.
This way she can spend time with him in hospital and at appointments, and have quality time with her eldest son Noah too.
The income also allows her husband to be a stay-at-home dad.
With so many medical procedures and so much sickness it made sense to have one parent at home at all times.
Melissa said expecting mothers, and all those who will one day be, should be told about CMV.
‘We are told about the food we shouldn’t eat – we need to know about these other things too so we can make the right decisions.’
She wants pregnant women to be able to take tests for the virus.
The doting mum didn’t realise how catastrophic a kiss on the lips could be
‘Our life would be completely different if I was tested and confirmed to have it – I could have taken antivirals,’ she said.
About five in every 1,000 babies are infected with CMV, and a swift diagnosis and treatment with six months of antivirals slows down the progression of symptoms and in many cases can completely stop the worst effects altogether.
‘We have our beautiful Huey, he is so lovely and we all adore him and I can’t imagine him any other way.
‘But I still want to advocate for more screening for CMV and raise awareness so mums don’t make the same mistakes.
Melissa shared her story follwing CMV awareness month in June.
CMV, is a known cause of cerebral palsy, epilepsy, deafness and other disabilities, yet it remains mostly unknown in the community.
