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Noah's Story
"Noah was born on 30th January 2011 after a fairly unremarkable pregnancy and a fairly normal delivery (even with the cord round his neck!)..."
He failed his newborn hearing screening test but we and the examiner put it down to congestion and arranged a retest. Following two retests and still no response in his left ear, they referred us to the audiology department. In the meantime when he was about 3 weeks old, I received a call from Kingston hospital informing us that they had discovered I had an infection in pregnancy and they needed to see if I had passed it to Noah. With much hilarity we finally captured a urine sample and rushed it to the hospital as they said we only had a small window in which to test for the virus.
But the laughter was initially short lived – a few days later I received a call to say that Noah had indeed contracted the virus but that he showed no signs of being affected and would probably be fine. I happened to mention the failed hearing tests and they put two and two together and called us in. It was Friday and we had to wait till the following week for our appointment – in the meantime we went online and read about what our future might hold. We spent a very tearful weekend reading about what Noah’s life might be like as a child with cCMV and we were devastated. That all seems like a lifetime ago – following a meeting with Dr. Sue Luck, Noah was admitted to Kingston Hospital and from the age of 4 weeks until 10 weeks old he received twice daily IV Gancyclovir.
Since then he has had regular check ups and all seems to be going well – his eyes are clear of CMV and apart from a bout of glue ear his hearing seems unchanged. Mostly it’s not getting in the way and he is developing very well. He speech is good and developmentally specialists feel his ahead of the game so we keep our fingers crossed that the treatment worked.
Last year he started suffering from febrile convulsions – originally they happened 3 months or so apart, but at the beginning of this year they became more frequent and we have been referred to a paediatric neurologist. They have always accompanied a fever but there is no history in our family so they are surprised that he’s had so many. The specialist says they could be related to the CMV or they might just be childhood febrile convulsions. For now, we’re staying with the optimistic view that he’ll grow out of them!
- Shared by his mother