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A mother of four talked about the devastating effects of a little-known herpes-like virus on her eight-year-old twins.
Kate Daly, of Sydney, is heartbroken after learning that her twins, William and Emmaline, have cytomegalovirus (CMV).
The rare virus can be transmitted by pregnant women to their unborn baby and is transmitted by body fluids such as saliva, tears, urine and bad milk.
While this is relatively harmless in healthy people, it can be debilitating for unborn babies – and in extreme cases, can also claim life.
Sydney's Kate Daly was heartbroken after learning that her twins, William and Emmaline (pictured), had Cytomegalovirus (CMV).
William (left) was diagnosed with significant hearing loss due to conbad CMV contracted. Her twin sister Emmaline (right) has since developed a learning disability.
While most babies with CMV will grow up without any effect, about 400 will develop disabilities such as deafness, blindness, microcephaly (where the brain is not growing properly, resulting in a smaller head than usual). ) and epilepsy.
Ms. Daly learned of the devastation that the virus may have when she learned that her twins had been affected.
After giving birth to her twins by caesarean section at 37 weeks, Ms. Daly was delighted to learn that everything seemed in perfect health.
But things changed radically when they both failed the auditory examination of the newborn and the CMV virus was brought to his attention.
William, now 8 years old, has since developed mild cerebral palsy and has subsequently been diagnosed with severe intellectual disability and autism.
Ms. Daly (left with her son Will) now dedicates her life to bringing to light the little-known virus. She is shocked that she has not been informed of the precautions that she could have taken to help prevent the virus.
"The first time we talked about CMV, it's when audiologists asked us if we wanted to test William for that," she told Daily Mail Australia.
William then had a blood test and a urine test that confirmed that he had CMV. At this point, they were not yet 100% sure whether William had contracted CMV before or after birth, but later he did a CT scan to check his cochlea and they found out that it was calcification deposits on William's brain. & # 39;
"The infectious disease specialist was then able to confirm that William's hearing loss was due to conbad CMV."
Having never heard of the disease, Ms. Daly searched desperately for answers.
"Before I got the results of the urine test, I had CMV on Google and learned very quickly the devastating impact the CMV could have on babies," she said.
"I was then informed of the results over the phone when I was at home with the kids.
As CMV is so little known, the receptionist did not understand the seriousness of what she was telling me.
Will, who is now 8 years old, has to live with bilateral cochlear implants, level 2, to help her overcome her hearing loss.
Ms. Daly has since founded the CMV Conbad Association in Australia and wishes to highlight the precautions that pregnant women can take to minimize their risk of acquiring CMV.
Will, now 8 years old, lost all of his hearing at the age of one year and was later diagnosed with mild cerebral palsy, severe intellectual disability, and autism, all due to CMV.
Her twin sister Emmaline has also developed a learning disability.
Ms. Daly said she was upset after hearing the diagnosis, especially after taking extra precautions during pregnancy.
My husband and I needed the help of IVF for our 4 children. At first we suffered a lot from getting pregnant and that's why I was very careful to follow all the health recommendations during my pregnancy. & # 39;
"When I discovered that if I had been informed about CMV, I could have taken some simple precautions to minimize my risk of contraction by 50% – I was completely shocked, really shocked, I do not even cover it, "she added. .
After being informed that she could not know anything about the outcome of the virus for William and Emmaline, she decided to take matters into her own hands.
"My husband Hugh and I had to learn to live with the unknown and wait. I was not very good at that.
Ms. Daly has since founded the CMV Conbad Association in Australia and wishes to highlight the precautions that pregnant women can take to minimize their risk of acquiring CMV.
"I then read everything about the disease, the only way for me to manage this disease was to understand as much as possible.
"I discovered that there was no reference organization in Australia for families affected by conbad CMV, so I decided that I had to change that."
Ms. Daly now heads the CMV Conbad Association of Australia and wants to highlight the precautions that pregnant women can take to minimize their chances. It also aims to streamline counseling so that women apply the rules exactly as they would to eat the right foods and avoid alcohol.
On Saturday, the Royal Australian College of Obstetricians and Gynecologists released new recommendations on CMV prevention.
Since saliva is the leading cause of transmission, the recommendations indicate that women can reduce risk by avoiding sharing food, drinks, refraining from putting a child's dummy in their mouths and by kissing their child on the lips.
He also advises pregnant women to always wash their hands with soap and water after work, such as changing diapers, feeding their young children, or wiping their noses.
Additional precautions can also be taken by carefully cleaning their children's toys and wiping the benches where food and other surfaces are prepared.
Ms. Daly (pictured with her husband Hugh) hopes to simplify counseling so that women will apply the rules as they would when they eat the right foods and avoid consuming alcohol.
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