Tell us about yourself and your lovely little family:
My name is Bree and my partner Mitch and I have two children, Dylan who is 4 and Dax who is 2.
Dylan is our confident, happy go lucky, free spirited daughter.
Our son Dax is our cruiser, cool, calm and collected one. Dax has Congenital Cytomegalovirus cCMV.
What is cCMV?
Cytomegalovirus (CMV) is a common viral infection, especially among young children. 50% of people will have been infected by young adulthood and up to 85% by 40 years of age. Congenital CMV (cCMV) occurs when the infection is passed across the placenta from a pregnant woman to her developing baby. One to two children are born with disabilities from cCMV everyday in Australia alone.
It causes deafness, blindness, seizures, global development delay, dyspraxia, cerebral palsy, miscarriage, stillbirth, intellectual disability, processing issues, feeding problems and death.
In our case, it is thought that I contracted a primary infection of CMV at around 20 weeks gestation. As a result of this Dax has unilateral sensorineural hearing loss, Microcephaly, refractory Epilepsy in the form of infantile spasms, quadriplegic dystonia (cerebral palsy), cortical vision impairment, brain changes including polymicrogyria and a global development delay. He also has a smile that will melt your heart, a laugh that is infectious, determination that could move a mountain, he is a pure joy.
In what ways has CMV affected your life?
Having another child was always going to change our family dynamic. To be honest, we don’t know any different. Our routines are different and simple tasks take longer to that of when we just had Dylan, but I expected that, we just adapt. Our perspective on life and what is important to us is clearer. It didn’t take long to realise that the things we can’t change end up changing us.
What’s your support network like?
We are truly blessed with an amazing support network, both formal and informal. We have an amazingly dedicated team of professionals, from our general practitioner, paediatrician, neurologist, dietician, occupational therapist, physiotherapist, speech therapist, hearing services team, swim instructors, early childhood educators and social workers.
As for our family and friends, words cannot describe our gratitude. It really does take a village to raise a child and our village is AWESOME.
What gets you through the rough times?
Usually a cry and a glass of red wine.
More recently, after a tough week a trip down the coast. Fortunately Mitch was able to score a few extra days off, so we cancelled therapy, skipped kindy and put everything on hold. We just spent a few days, just the four of us, whale watching, eating fish and chips, collecting shells and enjoying the winter sun. There is nothing a dose of the coast can’t fix.
What do you do for fun together?
We have lots of fun. We love catching up with family and friends. We love the coast. The kids love to wrestle with Mitch, Dylan loves to sing and dance, and Dax loves anything that is bright and shiny.
What does ‘me-time’ look like for you?
Ha-ha, sorry I had to laugh.
I like to have a really long hot shower and a cup of tea in silence. I am sure most mums would love the same.
What was life like before CMV?
It was definitely a different chapter in our lives. We were living in Darwin, working and exploring the NT. Dax’s diagnosis brought us home to Engadine to be closer to family support and closer to excellent medical care.
Have you been able to get back to work?
I work part-time at a local medical practice and I’m also a General Board Member of the Congenital CMV Association of Australia. I also manage our Facebook page ‘The Double D’s take on CMV‘ between running kids to kindy, therapy and appointments.
How has CMV affected the family’s relationships?
It has definitely tested my relationship with Mitch. It’s like a roller coaster. We are on the same ride but sometimes in different carts. I might be on my way up and he is still going down. We balance each other out though. We always arrive at the same destination in the end.
Tell us about Dylan and Dax’s relationship:
Dylan is very proud big sister and Dax is a smitten little brother.
I worry that Dylan has had to grow up a little bit faster than most other children her age. She knows that Dax’s brain grew a bit differently in Mummy’s tummy; she knew what Epilepsy was by the time she was two and a half.
Dylan is so caring and compassionate; I often see her comfort Dax through a seizure. She will be the first to tell you you’ve forgotten Dax’s medicine. She is already an advocate for him in her own little way.
As for Dax, he adores Dylan. His face lights up when she enters the room. He giggles uncontrollably when she blows raspberries on his belly. They share a room and Dylan hates to be in there on her own.
And your relationship with Dylan?
My relationship with Dylan is probably where most of my Mum guilt lies. It’s hard for Dylan to understand that sometime I need to give a bit more time to Dax. She went from having Mum and Dad all to herself, to having Mum, Dad and Dax and everything that came with cCMV. I try to have as much one on one time with her. We talk, with her, with each other, with her kindy teachers and try to be as understanding as possible. We have a very close family and we wouldn’t have it any other way.
What are your hopes and fears for the future?
I try not to think too far ahead. There are things that are out of my control, so I try to focus on what I can control.
I have high hopes for the future. I hope Dax will walk, I hope Dylan will keep on singing and dancing. I hope we have health, I hope we continue to laugh and I hope pregnant women in Australia are warned about CMV.
June is CMV awareness month. What do mums and mums-to-be need to know about CMV?
Pregnant women are recommended to take steps to reduce their risk of exposure to CMV and to reduce the risk of their developing baby becoming infected:
• Wash hands often with soap and running water for at least 15 seconds and dry them thoroughly. This should be done especially after close contact with young children, changing nappies, blowing noses, feeding a young child, and handling children’s toys, dummies/soothers.
• Do not share food, drinks, eating utensils or toothbrushes with young children.
• Avoid contact with saliva when kissing a child. Kiss your children on the forehead not the lips.
• Use simple detergent and water to clean toys, countertops and other surfaces that come into contact with children’s urine, mucous or saliva.
• Childcare workers who are pregnant or considering pregnancy should pay particular attention to good hand hygiene, especially after changing nappies or assisting with blowing noses or toileting.
Want to find out more about CMV?
Visit cmv.org.au and talk to your healthcare professionals. Educate yourself and be CMV Aware.
