Kissing your toddler is second nature to all moms, but for Melissa Howard, doing this while pregnant has now turned out to be the biggest regret of her life.
The 38-year-old nurse from Margaret River in Western Australia said she must have contracted the cytomegalovirus, or CMV, from kissing her firstborn son or sharing his food while she was pregnant.
The virus is transmitted through bodily fluids, including saliva, and has only mild symptoms, making it often undiagnosed and relatively harmless — unless you’re pregnant.
Then it can travel through your bloodstream and infect your baby – often with serious complications and leading to disabilities such as cerebral palsy and deafness.
Melissa Howard with husband Peter Joyce and their two sons, Noah and Huey
Huey, 5, has been unwell most of his life – doctors recently linked his disability and general illness to CMV, a usually harmless virus
“We’re told to pay attention to so many things when we’re pregnant, but not this virus, which is everywhere,” she said.
“CMV stays in your body and when you’re exhausted, like shingles and other herpes viruses, it reactivates and if you’re pregnant it can spread to your baby.”
Melissa has admitted she has no knowledge of the virus and its devastating effect on babies and has read it ever since, but says hospital staff should do the same.
Signs that something wasn’t right started at 27 weeks — she gave birth to her second son Huey at 34 weeks after stints in and out of the hospital.
‘During pregnancy, my body was screaming that something was wrong, but doctors thought our blood wasn’t compatible.
“He was born quite unwell and needed a blood transfusion, we went straight to the NICU. He had a rash all over his body that screamed CMV but was not tested for it,” Melissa said.
Melissa must have contracted CMV during pregnancy – it’s usually spread through bodily fluids – she says she wouldn’t have kissed her toddler or shared his food if she’d known
Huey’s link to CMV picked up after he started losing his hearing – an MRI showed brain calcification and damaged white matter
Had they noticed the warning signs earlier, especially when Huey was in the womb, they could have destroyed the virus and prevented it from doing more damage.
‘In the first few years we were in and out of the hospital a lot. He had pneumonia for the first three months, but this too was left untreated and his left lung stopped working,” she added.
Problems continued to crop up for the youngster.
When he was four, his hearing deteriorated rapidly.
“I asked why he was standing next to a speaker and he told me he couldn’t hear anything out of that ear.”
The family had MRIs done to see what was wrong with his hearing and were initially happy to hear that his ears were ‘pristine’.
Huey has been unwell since birth and showed many signs of CMV – his mother says if the doctors noticed he might not have so many complications today
Melissa explained that in his five years, Huey has had seizures, hearing loss, and even had a pulmonary arrest
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 begin to turn.
He said, “35 percent white matter has been destroyed – he has calcifications throughout the brain and you will need to see a neurologist.”
Since then, the cheerful five-year-old has lost most of the hearing in his left ear and some in his right ear.
The family learns sign language together so they can communicate with Huey when his hearing is completely gone.
Adding up all the problems Huey had encountered, the doctors determined for the first time that CMV was the culprit, and that made everything else fall into place.
For years he had regular epileptic seizures, problems with his gait and muscles.
“He’s got a lot of things going on, including a DMNT1 genetic variation — so rare it’s never been seen before, so we’re waiting to see if that does anything,” she said.
Despite his challenges, Melissa said she’s proud of how well her son is doing.
“On paper he shouldn’t be eating, drinking, walking,” she said.
The youngster defies all expectations “on paper he shouldn’t be able to eat, drink or walk,” said Melissa
The busy mom has taken on a FIFO nursing role since Huey’s birth.
This allows her to spend time with him in the hospital and at appointments, as well as quality time with her oldest son Noah.
The income also allows her husband to be a stay-at-home dad.
With so many medical procedures and so many illnesses, it made sense to always have one parent at home.
Melissa said mothers-to-be, and all those who will one day be, should be told about CMV.
“We’re told about the foods we shouldn’t eat — we need to know about these other things as well so we can make the right decisions.”
She wants pregnant women to be able to get tested for the virus.
The loving mother did not realize how catastrophic a kiss on the lips could be
“Our lives would be completely different if I had been tested and confirmed I had it — I could have taken antivirals,” she said.
About five in 1,000 babies are infected with CMV, and prompt diagnosis and treatment with six months of antiviral drugs slows the progression of symptoms and, in many cases, can stop the worst effects altogether.
“We have our beautiful Huey, he is so sweet 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 raising awareness so mothers don’t make the same mistakes.”
Melissa shared her story after CMV awareness month in June.
CMV is a known cause of cerebral palsy, epilepsy, deafness and other disabilities, but it remains largely unknown in the community.