MUM-TO-BE Stephanie Whitelock made sure she did everything by the book when she was pregnant. She avoided foods like pâté, and soft cheese and obeyed all the rules.
So the 39-year-old, from Reigate, Surrey, was devastated to learn that her boy, Gabe, had contracted a life-changing virus while in her womb.
Nobody warned Stephanie about the dangers of congenital cytomegalovirus (CMV) – or how easy it is to catch.
Mums can become infected through kissing or simply eating and drinking utensils, toys and dummies.
Two to three babies every single day are born with the disease – and it’s one of the main causes of childhood disability and a leading cause of hearing loss.
It causes more birth defects and childhood deaths than Down’s Syndrome, Toxoplasmosis (from cat poo) or Listeriosis (from soft cheese) – but like many women who contract it, Stephanie had no symptoms.
Stephanie’s son developed the virus at 20 weeks, which left him with life-long brain damage. Here the mum-of-two shares her heartbreaking story…
WHEN I was pregnant with my youngest child, I loved that feeling of sheltering him inside my tummy, keeping him snug and safe until he was ready to meet the world.
Finding out my unborn child was NOT safe in my womb was utterly devastating.
Five months into my pregnancy, and without me experiencing obvious symptoms of illness, he contracted a common virus which left him with serious learning and physical disabilities.
Gabe arrived on November 15, 2015 – a second baby for me and my husband, James, and a little brother to our firstborn, Ned.
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After a trouble-free birth, he seemed to be a healthy newborn.
We were happy and proud to bring our beautiful boy home to start his life as part of our family.
But in the months that followed, we realised he wasn’t reaching his baby milestones. He didn’t roll over or sit up, like other children his age.
We noticed his mouth drooping slightly, and his head was a little bit small in comparison to his body.
We took Gabe to our family doctor and insisted on tests.
Around his first birthday, a paediatrician confirmed that he had been born with congenital cytomegalovirus (CMV).
It had damaged the right side of his brain, leaving him with cerebral palsy, a learning disability and eyesight problems.
The infection had crossed the placenta from me to my unborn child in the womb – yet I recall no symptoms and was never aware of being unwell.
We were told that Gabe contracted the virus around 20 weeks into my pregnancy.
The doctors knew precisely when CMV struck from the degree of brain damage he suffered – basically his brain stopped developing from that point on.
The infection had crossed the placenta from me to my unborn child in the womb – yet I recall no symptoms and was never aware of being unwell. We were told that Gabe contracted the virus around 20 weeks into my pregnancy.
Stephanie Whitelock,
But in some respects, we later realised, we were lucky – in extreme cases the virus can even cause babies to be stillborn.
As the months went by and Gabe’s second birthday came and went, people often commented on how gorgeous he was.
Complete strangers stopped us in the street to say, telling us he looked like the Milky Bar kid with his glasses and blond curls.
But even though our boy brought us so much joy, the passing of time revealed more and more how the virus was limiting his life.
Cerebral palsy meant he struggled to move purposefully – he couldn’t crawl or walk or use his left side properly, including his left hand.
He couldn’t reach out to grasp food or toys and his speech was very limited.
Being unable to express himself to tell us what he wanted sometimes made him frustrated and angry.
The treatment he was offered by the NHS was brilliant but there simply wasn’t enough of it. Physiotherapy and occupational therapy were only an occasional treat.
What is cytomegalovirus?
Cytomegalovirus, or CMV, is a common virus that can infect people of all ages.
Congenital CMV happens when a baby is infected before birth.
Congenital CMV is one of the leading causes of hearing loss in children and one of the main causes of childhood disability. It causes more birth defects and childhood deaths than Down’s Syndrome, Toxoplasmosis (from cat poo) or Listeriosis (from soft cheese).
The main way of catching CMV is through person-to-person contact – via bodily fluids such as urine, saliva, blood, faeces, tears, breast milk, semen and cervical secretions.
One in 200 babies are born with congenital CMV, although only one in five of those will experience long-term health problems as a result. These may include hearing loss, vision loss, seizures, developmental delay and microcephaly.
Young children are the biggest carriers of CMV.
You can catch CMV by kissing, sexual intercourse, sharing eating and drinking utensils, or sharing toys that have been sucked or put into children’s mouths.
You cannot catch CMV by merely being in the same room with someone who is infected.
With no screening or vaccine, organisation CMV Action says the best advice for pregnant mums is to take extra care with simple hygiene rules. They advise not eating your children’s food, sharing their cutlery, putting their dummy in your mouth or kissing them on the mouth, and washing your hands after touching anything that may have been in contact their urine or saliva.
Determined to give Gabe the best possible start in life, we turned to the internet to look into treatment options.
We soon realised that the UK was years behind the USA in dealing with cerebral palsy.
American doctors believe in early intervention to maximise potential in later life. They say the best time for treatment is between the ages of two and six years old.
James and I agreed treatment in the USA could make a real difference to the rest of his life.
Together with family and friends, and helped by social media, we began fundraising for £7,000 for intensive physiotherapy the NAPA Centre, Boston, America.
We believe the treatment could make an enormous difference to our son. In a matter of weeks it can apparently produce the same results as more than a year of physiotherapy here.
I worked in student guidance at Reigate College for 12 years but gave up my job earlier this year to support Gabe – now I sing in bands at weekends.
James – an IT consultant and guitarist – and I also want to raise awareness of this common but little-known and potentially lethal virus.
CMV is really dangerous, yet there is virtual silence about it.
Midwives don’t know enough about it to be telling their patients, and many doctors and consultants seem to be completely in the dark, too.
Today, having just celebrated his third birthday with a family birthday party, Gabe brings huge joy to our family.
His courage in adversity inspires us, every day. But he can’t stand unaided or walk, and can only say just a handful of words like Mummy and Daddy.
CMV is one of the leading causes of childhood disability. But before it affected our family, James and I had never even heard of it.
Midwives don’t know enough about it to be telling their patients, and many doctors and consultants seem to be completely in the dark, too
Stephanie Whitelock
As a pregnant mother-to-be, I was constantly being told not to take risks like eating pâté or raw egg. But this virus is something that two to three babies are born with every single day.
Yet nobody ever warned me about it, or told me the simple hygiene rules I should be following to protect my unborn child, which could have saved him from a lifetime of health problems.
Donate to Gabe’s cause at Just Giving.
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