Going out if my mind - CMV testing in newborn

[ChocolateBiscuitCake]

ds, now 8 weeks old, was confirmed with unilateral hearing loss at 10 days old. We got a urine sample and I hand delivered it to the receptionist at the ENT department at the hospital.

Have just had 8 week check at GP has tried today to follow up the results. The lab has no record of my son. So essentially the sample has been lost.

Apparently a newborn needs to be tested in the first 2-3 weeks to get confirmation of congenital CMV. As I understand it, if he has got CMV, there could be long term implications of learning difficulties, blindness and further hearing loss.

I can not spend the next 5 years worrying whether he has it or not and living with the 'what ifs'.

Is there anyone out there who knows what I can do - am happy to pay for private testing, if it is possible?

Any thoughts etc so welcome. Am beyond outraged with the hospital but need to focus on my little chap first.

Bump

If he had his heel prick test they can use this to check for CMV.

My DD was born profoundly deaf, they didn't investigate why until she was about 6 months old, they had to go back to her heel prick samples to check for CMV, fortunately it wasn't this. We have never found out why she is deaf, she has no other problems and is very happy (and healthy) little girl. She has cochlear implants and excellent spoken language.

Have you joined the NDCS? They were helpful for us in the early days, there's a forum on their website which can be useful and reassuring too. I know there's a lot to take in, and it seems so unfair to have to do it with such a young baby. I'm happy to answer any questions you have, obviously I'm not an expert, just another parent who's been where you are now.

Thank you SO much for taking the time to respond. He did have the heel test, so am I right to assume that they store all the cards?

Great to hear about your daughter - what a trouper and lovely to hear that she has thrived. Funnily enough, a representative from our council's education department came over to talk to us and she said that lots of hearing impaired children reach or exceed their full potential when the correct support is put in place.

Will look at NDCS too. Thank you

Yes I gather they store them somewhere

NDCS run information weekends for parents of newly diagnosed children too (it's free I seem to recall, with childcare provided too), we didn't go on one but have some friends who did and found it really helpful. Best of luck to you and DS x

chocolatebiscuitcake, I'm so sorry you are having all this worry. I assume the reason for the 2-3 week window is to find out, not only whether he has CMV but if he does, if he contracted it in utero. As ornellaia says, the heel prick test should be able to provide some info if the card has not got lost.

But presumably even without the card you can still find out now if he has CMV - I thought it was a simple blood test (it is for adults anyway). If he has it now at just 8 weeks old, chances are he caught it in utero I guess. But first you need to find out if he has it or not. I don't think it's complicated - sounds like your GP might need a bit of a kick up the backside.

I recall all this worry myself. I am CMV negative which is unusual for adults and I was very fearful of contracting the virus when pg. Hope you get some help soon.

Hi. I have just seen your post, not sure if this is too late but my little girl was born with congenital CMV. I apparently caught primary CMV infection in the first trimester but had absolutely no symptons. If you would like to talk to someone who has first hand experience please contact me. All CMV cases are different but prognosis is not always as bad as the professionals make out. My little girl is nearly 2 and although a little bit developmentally behind she is as bright as a button. Sending you hugs. I know how difficult the first few months can seem but believe in your little one, take one day at a time and remember medical professionals are not always right.xx