CMV detected in routine blood tests

[LV2810]

I had routine blood tests at 9 weeks and they detected CMV in my blood, further blood tests confirmed that it was not a current infection but what they can not be sure of is if it predated the pregnancy or not. I am 12 + 4 now
I have been advised to now have further bloods done, a more detailed scan at 16 weeks and an amniocentesis to ensure the baby has not been infected because it may cause the baby to have abnormalities.
I am really worried, upset and stressed. Obviously there are risks associated with the amniocentesis and that is worrying but I am more worried about if they baby has been infected with CMV.
Has anyone experienced this? I am really worried so any advice or words of wisdom would be really appreciated.
Thank you
x

Hi there. I'm really sorry to hear about all the stress you're going through at the moment. Not what you want in pregnancy.
My eldest daughter was born with CMV. We only found out after she was born when she failed her newborn hearing test. I now volunteer for the UK charity CMV Action which gives support to pregnant women and families who may have been affected.
First a few facts that I hope will give some reassurance. Its estimated that around 60% of the UK population will have had CMV at some point. So its not unusual for people to carry the CMV antibodies. Great to hear that they didn't pick up a current infection. It sounds like they're just being very thorough to try and make sure that you didn't have an infection right at the start of your pregnancy.
Even if test suggest that you did, mums pass CMV on to the feotus in only about one third of cases. Then around 1 in 5 of those babies born with the virus will have permanent disabilities. So its certainly not a foregone conclusion that your baby will be affected even if you did have an infection in pregnancy.
The most common long-term effect of CMV is hearing loss. My daughter was born profoundly deaf. She's now a chatty little 4 year old who started at a mainstream primary school last week. The hearing aid technology is AMAZING these days and whilst is was all very stressful to begin with, its just a part of normal family life now. Some children are more severely affected though and have physical and learning disabilities.
If you contact CMV Action on 0845 4679590 or [email protected] (mention that you were chatting to Caroline on Mumsnet) then one of us will be in touch and can give you more information and support. Theres also loads more info on www.cmvaction.org.uk
I hope everything goes well with the further tests. Whilst its all very distressing, even if the worst happens and the baby has been infected it means that they will be able to start antivirals as soon as the baby is born. My daughter was diagnosed too late for that to happen unfortunately :-(
You're not alone - there are many of us who have been through this before and are here to help. Do get in touch if you would like somebody to talk to.

Hello Caroline,

Thank you so much for the response and information which is really helpful. In all honesty, I am very afraid. I will contact CMV action today, as I am very worried about the implications IF baby has been affected. My cousin caught the infection at 32 weeks and lost her baby, it really is very scary and there is very little information out there about it, even though I had heard of it, I didn't know anymore about the virus itself. Thank you again for taking the time to give me these facts.

Caroline has covered the stats, but the conclusion I drew after looking into the various probabilities is that the risk of serious disabilities is rare. I found out I had a current CMV infection during pregnancy after a TORCH screen. I was so scared. But I found out 80% or more women of childbearing age have been exposed at some point in their lives, and as screening is not usual there will be many women infected during pregnancy who won't know, and will never know as their babies are born with no problems.

In my case, my baby was actually never exposed even though I had an active infection during pregnancy. We were kept for observation for 24 hrs after birth and he had lots of tests, all clear.

I had to try and say to myself "what will be, will be" and stay positive. We were clearly VERY lucky but there is no reason you won't be too. My consultant was quite relaxed about it to be honest, and I took my cue from her. Stay strong xx

Hi there. I am sorry to hear you are going through this. I was just like you 2 years ago with my daughter Matilda. I found out through blood tests (TORCH screen) that I had a new CMV infection during my pregnancy. That was at 21 weeks and it was a stressful time - I know how you are feeling right now. Firstly, like HoorayHenri said, say positive and stay strong. And take each week as it comes.

There will be a lot of take in and you will might have a lot of questions. When I found out about CMV, I did contact CMV Action for support. Knowledge and having an understanding of what you can ask for and extra support is so so helpful.

As I was 21 weeks, I was offered the animo to see if my baby also had the infection. They also re-tested my booking in bloods to see if it was detected then. The animo came back positive - the infection had passed but the positive thing was that my scan at 21 weeks was very good and showed no signs of the infection. Through analysing the blood tests, we could work out I had caught CMV around week 16-17.

I had regular scans + an foetal MRI later in the pregnancy too look at brain development. I also attending weekly hospital appointments as my iron levels dropped dramatically. The Royal Free in north London were fantastic in caring for me during this time.

By the time Matilda was born, we were mostly worried about her hearing. She did pass her newborn hearing but we also had to have a cranial ultrasound, eye text, urine and blood tests too.

Matilda is 2 next week and, so far, shows no signs of the CMV infection. That's not to say we are out of the woods, we still have to have her hearing tested regularly until she is 5. One consultant told me that longer things appear to be normal, the better the outcome. You could say that for pregnancy as well.

The outcomes of a CMV infections varies in each pregnancy so do stay strong and stay positive.

You can read my story of CMV on the CMV Action website too - which might give you more detail and might be able to help?
cmvaction.org.uk/our-stories/matilda

I volunteer with CMV Action as well, so if you wanted to chat or email me, we could arrange that. Don't go through this alone - Kat xx

Hello,

I have found it hard to come across posts regarding CMV. At my 20 week scan they found that our baby had slightly echogenic bowel and did some viral blood tests. 2 weeks later we went back for another fetal medicine scan and it turns out that i tested positive for CMV, suggestive that it is a primary infection caught between 6-8 weeks of my pregnancy. I feel so unlucky that i may have caught it at this time as i have read it is the most dangerous and high risk time to catch the infection for the baby. I am trying to stay positive but am finding it quite hard most of the time as alot of the outcomes i have read from people are worrying.

I have come across experimental trials to HIG Hyperimmunoglobin treatment to prevent symptons in the unborn baby, i was wondering if anybody else has heard of this? And how i would go about getting this?

Hi all - maybe I am too late to contribute here.

OP the exact same thing happened to me when I was about 11 weeks pregnant with my DS (he is now 2). I appeared I had had a primary CMV injection within the previous 6 months - meaning it could have been during the pregnancy.

A series of further blood tests showed conclusively that I had consistent and level CMV anti-bodies in my blood indicating the infection had been some months before I got pregnant. So all further action was cancelled, I did not have an amino, and my son was healthy.

Has your situation been resolved yet? Based on your description you too may have nothing to worry about. However I remember wanting to vomit every day while we waited for evenly spaced blood test results.