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Congenital CMV - anyone with experience of long term effects?

(7 Posts)
refausse Wed 30-Oct-13 09:40:18

My DD has just been diagnosed with congenital cytomegalovirus. She is 18 months old and was born with a mild hearing loss in one ear which has changed to a severe loss in both ears over the last few months. An initial CMV blood test came back negative but subsequent tests on her newborn Guthrie sample have confirmed CMV. We have been referred to GOSH and awaiting an appointment. I am beside myself worried that she might go on to develop other CMV symptoms and just looking for anyone with long term experience of this who can give some idea what the future might hold. DD failed the newborn hearing screening in one ear but was otherwise healthy and remains so. Any advice or experiences much appreciated - many thanks

lougle Thu 31-Oct-13 14:02:10

I know a girl with CCMV. She's severely hearing impaired (cochlear implants) but otherwise is doing well. I think you'll have close follow up for your DD, so any issues will be picked up early.

refausse Thu 31-Oct-13 14:14:47

Thank you for responding, really good to hear that, do you know how old she is?

lougle Thu 31-Oct-13 14:35:15

She's young, but I really don't want to give any identifying details.

refausse Thu 31-Oct-13 14:54:19

No thats fine I totally understand, thank you again for responding, we are feeling a little lost at the moment!

ilikemysleep Sat 02-Nov-13 22:24:11

A friend in the US has a son with congenital cmv. He has some learning difficulties in consequence, but these were caused 'pre birth', not a deterioration after typical development. He is doing well but is a slower learner, otherwise very healthy. As I say he was slow to reach all milestones.

refausse Sun 03-Nov-13 15:04:29

Thank you for responding, that's reassuring. Apart from a lack of speech, which we presume is down to her hearing loss, DD has been on the slower side of normal with her milestones. She's not yet walking, though she is cruising, and the consultant thinks that delay is balance related, but it's so easy at this stage to put any little concern down to CMV. This is such a nasty and common virus, I am gobsmacked no health professional ever mentioned this to me when I was pregnant

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