A mother-of-four has told of the devastating effects a little-known herpes-like virus has had on her eight-year-old twins.
Kate Daly, from Sydney, was left heartbroken after she learnt both her twins, William and Emmaline, had been affected by cytomegalovirus (CMV).
The rare virus can be transferred from pregnant women onto their unborn babies and is transmitted through bodily fluids such as saliva, tears, urine and breast milk.
While it’s relatively harmless in healthy people, it can be debilitating for unborn babies – and in extreme cases can also claim their life.
Kate Daly, from Sydney, was left heart-broken after she learnt both her twins, William and Emmaline, (pictured) had been affected by cytomegalovirus (CMV)
William (left) was diagnosed with significant hearing loss which was due to him contracting congenital CMV, his twin sister Emmaline (right) has since developed a learning disability
While most babies with CMV will grow up without any effects, about 400 will develop disabilities including deafness, blindness, microcephaly (where the brain doesn’t develop properly, resulting in a smaller than usual head) and epilepsy.
Mrs Daly learnt of the devastation the virus can have when she was told her twins had been affected.
After delivering her twins by caesarean at 37 weeks, Mrs Daly was delighted when she was told all appeared perfectly fine with their health.
But things dramatically turned when they both failed their newborn hearing scans and the CMV virus was first brought to her attention.
William, now 8, has since developed mild cerebral palsy and later diagnosed with severe intellectual disability and autism
Left shocked that she hadn’t been told about the precautions she could have taken to help prevent the virus, Mrs Daly (left with son Will) now dedicates her life to highlighting the little-known virus
‘The first time CMV had ever been mentioned to me was when the audiologists asked if we’d like to test William for it,’ she told Daily Mail Australia.
‘William then had a blood test and a urine test which confirmed that he had CMV. At this stage they still weren’t 100 per cent sure whether William had contracted CMV before or after birth but later he was given a CT scan to check his cochlear and they found that their were calcification deposits on William’s brain.’
‘The infectious disease specialist was then able to confirm that the cause of William’s hearing loss was congenital CMV.’
Having never heard of the disease, Mrs Daly desperately searched for answers.
‘Before getting the results for the urine test I had Googled CMV and learnt very quickly the devastating impact CMV can have on babies,’ she said.
‘I was then told the results over the phone while at home by myself with the kids.
Because CMV is so little known the receptionist didn’t realise the gravity of what she was telling me.’
Will, now 8, has to live with bilateral cochlear implants, level 2, to help him with his hearing loss
Mrs Daly has since founded the Congenital CMV Association of Australia and hopes to highlight precautions pregnant women can take to minimise their chances of CMV
Will, now 8, lost all his hearing by age one and was later diagnosed with mild cerebral palsy, severe intellectual disability and autism all due to CMV.
His twin sister Emmaline, has also developed a learning disability.
Mrs Daly says she was left shattered after hearing the diagnosis, especially after she had taken heavy precautions while she was pregnant.
‘My husband and I required the assistance of IVF for all 4 of our children. We went through a lot to get pregnant in the first place and for that reason I was particularly careful to follow all of the health recommendations while I was pregnant.’
‘When I then found out if I had been informed about CMV, I could have taken on board some simple precautions to minimise my risk of contracting by 50% – I was completely shocked, actually shocked doesn’t even cover it,’ she added.
After being told there was nothing she could do in terms of knowing what outcome William and Emmaline will have with the virus, she decided to take matters into her own hands.
‘My husband Hugh and I had to learn to live with the unknown and just wait and see. I wasn’t very good at that.’
Mrs Daly has since founded the Congenital CMV Association of Australia and hopes to highlight precautions pregnant women can take to minimise their chances of CMV
‘I then read up on everything about the disease the only way I knew how to deal with this was to understand as much as I could.
‘I found out there was no go-to organisation in Australia for families affected by congenital CMV, so I decided that I needed to change that.’
Mrs Daly now runs the Congenital CMV Association of Australia and hopes to highlight precautions pregnant women can take to minimise their chances and aims to streamline the advice so women apply the rules just as they would do when eating the right foods and avoiding alcohol.
On Saturday Australia’s peak body the Royal Australian College of Obstetricians and Gynaecologists published new recommendations on preventing CMV.
As the most common cause of transmission is through saliva, the recommendations state women can reduce the risk by avoiding sharing food, drinks, refraining from putting a child’s dummy in their mouth and kissing their child on the lips.
It also advises pregnant women to always wash their hands with soap and water after duties such as changing nappies, feeding their young children or wiping their noses.
Extra precautions can also be made by thoroughly cleaning their children’s toys and wiping down benches where food is prepared and other surfaces.
Mrs Daly (pictured with husband Hugh) hopes to to streamline the advice so women apply the rules just as they would do when eating the right foods and avoiding alcohol