I wanted to share my CMV story, this is my wonderful little boy Alfie.

I had a normal pregnancy and labour, I had Alfie at 11.30 at night and the next morning got him ready to take home. The doctor came round he had a purple rash under his skin an enlarged liver and spleen and was shaking has his blood sugars were low. We had to stay for more tests and found his platelets were very low, we were kept in hospital and the next day found out he had cCMV a virus I had never heard of.

We were then told he could be deaf, blind and have brain damage. Of course I was heartbroken, he then had his eyes and ears tested and a brain scan. He passed the eye test but they found calcification of the brain and he failed his newborn hearing test. We were then sent home bewildered with 6 weeks of anti viral drugs and we went back weekly for platelet tests and to make sure the drugs were working on decreasing the virus in his system and they did.

Alfie failed a few more hearing tests but passed at 18 months and was discharged from audiology. Alfie developed at a normal pace up until 3 years. He started having seizures but after testing found he wasn’t epileptic.

He then started school and his teacher noticed that he wasn’t keeping up with his peers and put him on the SEN register for learning difficulties, she asked the nurse to check his ears and all was fine.

Then four months later the school nurse did another hearing test and he failed in his left ear. We were referred to audiology and found a late onset of hearing loss and he was fitted with a hearing aid. He recently started complaining about his right ear and failed the hearing test in his right ear too. We are now waiting for his new hearing aid. I want to share my story so parents keep on top of hearing tests as it can go later like Alfie an we were told his right ear will be fine. He takes all this in his stride and he is the most wonderfully happy little boy who I am so proud to call my son.


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