Noah was born on 30th January 2009 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 his parents, Matt and Sarah, and the examiner put it down to congestion and arranged a retest. Following two retests and still no response in his left ear, they were referred to the audiology department.
In the meantime, when he was about 3 weeks old, Sarah received a call from Kingston hospital who are participating in the Sparks-funded research. ‘They informed me that they had discovered I had an infection in pregnancy and they needed to see if I had passed it to Noah,’ explains Sarah. ‘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’ Sarah recalls. ‘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 (congential cytomegalovirus) and we were devastated.’ cCMV can cause mild to severe hearing loss and can be treated in the first months of life.
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 intravenous Ganciclovir, an antiviral drug.
He has regular check-ups and all seems to be going well – his eyes are clear of CMV and, apart from an occasional bout of glue ear which causes new challenges, his hearing seems unchanged. Mostly it’s not getting in the way and he is developing very well. His speech is good and he is picking up reading faster than average and developmentally, specialists feel he is ahead of the game so Matt and Sarah are keeping their fingers crossed that the treatment worked.
‘Noah is a happy, loving and enthusiastic little boy who is eager to learn so it seems we got off lightly in terms of CMV’ says Sarah. ‘Many other families I’ve chatted to have experienced more severe symptoms, including greater levels of hearing loss or hearing loss getting worse over time. I also know that a lot of families don’t get the opportunity to consider antiviral treatment for their baby because they just don’t get a diagnosis in time. We feel very grateful that Noah had the opportunity for treatment that could have preserved his hearing. We hope doctors will use the findings of the research funded by Sparks to give more children born with CMV this opportunity in future.’