I’m 36 years years old and I was born with congenital CMV. The diagnosis was made early on in the pregnancy and it hit as my eyes and ears were forming. When my parents were informed, they had never heard of CMV. When I was born my birth weight was low, 5.5 pounds (2.5 kg). I was yellow, with red spots and had an enlarged spleen. All classic signs of CMV.
As this was 1985, the medications that are now administered at birth for CMV weren’t available. Nowadays, medication can be given at birth to mitigate some of the effects. There was concern that I would have vision and hearing problems. The technology that can now detect hearing loss in babies straightaway wasn’t as advanced as it is now. When I was a small child, I had a couple of hearing tests, the results were inconclusive. I wasn’t officially diagnosed as half deaf until I was 16. I asked to get my hearing checked as I realised I couldn’t switch ears when talking on the phone.
I consider myself lucky, CMV causes major developmental disorders in many children. I have one ear that hears quite well and can ‘pass’ as full hearing. This hasn’t been without challenges. I worry constantly that I won’t hear everything in social situations and loud restaurants cause quite a bit of anxiety. I also encounter people who don’t believe I’m half deaf and can be cruel to me (happens more often than you think). But thanks to modern technology such as subtitles and phones that light up I can get by pretty well. I am thriving, living in Melbourne as a content writer, and have my lovely husband always looking out for me.
Many parents will have received a CMV diagnosis for their children and they would rightly feel scared. While you have reason to be fearful and anxious, there is hope. Now more so than ever, your children can live a happy life. We as a society need to realise that people with many disabilities can go on to achieve their aims with help and understanding. The posts that I see on Stop CMV are inspiring and I wish for them to be able to live their dreams and to live in a world where their disabilities do not define them.
Lastly, it worries me that in this day and age CMV is not more widely known. It is a very common virus that many people have in their lifetime but is particularly harmful to pregnant women and their unborn child. Hopefully, this changes and possibly even a vaccine be created.
Thank you to advocacy groups and efforts to raise awareness of this virus. It means more than you know. Thanks for reading my story and I hope one day that we can end the effects of CMV on pregnant mothers and their babies.