So Penny is my eldest at 36. Penny was affected by cytomegalovirus and is profoundly deaf, partially sighted and functioning at just under a year old (she also has seizures now and again but thankfully only around 10 a year). She loves being in her wheelchair and being out and about – car trips, walks ( as long as you dont stop moving !) . She loves spicy foods and pasta and fruit . She now lives in supported living ( 24 hour a day support ) and is thankfully only 30 minutes drive away – we see her twice a week. Penny can also ‘walk’ once she is up to her waist in water which is brilliant so we visit the local pool once a week when we can. Probably because of vestibular sensitivities Penny always has a soother so nearly all our photos have her with a ( colour coordinated !) soother either in her mouth or being twirled on her finger !
I thinks I probably picked up CMV before I was 6 months pregnant. I taught additional needs so was pretty relaxed with saliva but did double check when we thought German measels was doing the rounds…we all relaxed when it was just another Epson-Barre infection…. I had to take her privately for diagnosis as my GP thought I was neurotic being ex- special school.
I am so sorry to hear that there has been little change since Penny was born. I did a Radio 4 programme when Penny was a year old as it seemed, even then, unbelievable that there should be such lack of information ( or indeed misinformation) from the medical profession. Questions were noted in Hansard back in 1976 about increasing public awareness.