Can anyone reassure me about Cytomegalovirus (CMV)? Freaking out

(28 Posts)
User3433399 Mon 30-Sep-13 18:01:02

I'm wondering if anyone else has had a positive Torch Screen for CMV and then all has been fine with your baby?

I've just been told I tested positive on a sample taken at about 34 weeks (I'm now over 36), which would mean I'd contracted CMV in the previous 2-3 three months, so I guess somewhere in the late second or early third trimester. It appears I have a 'primary' infection, i.e. I've contracted it for the first time so don't have any previous immunity.

I've done all the usual Googling and read the NHS information, which frankly has really freaked me out in terms of risks of long term conditions and disabilities for the baby. I can't get a true sense of how likely this is, especially as the virus itself seems to be very common in the population. I've been called in to see the consultant immediately but have no idea what will be said or done.

I'm just looking for some reassurance really. I was really looking forward to the last weeks of pregnancy and now I am so worried for my baby.

TIA

OP’s posts: |
lostlove Mon 30-Sep-13 23:05:15

I'm afraid I know nothing about CMV other than what I've just read on NHS Choices, but I didn't want your post to go unanswered.

On the 'Can cytomegalovirus (CMV) harm my baby during pregnancy?' page it says that:

It is estimated that a third of women who become infected by the CMV for the first time during pregnancy will pass the infection on to their unborn baby.

and

Only 10% of unborn babies infected with the CMV virus will go on to develop problems, but unfortunately, these problems can be serious.

So, while that last bit is obviously very worrying, surely you've a very good chance of everything being fine? As in, there's a two in three chance you won't have passed it on, and then there's a 90% chance the baby won't be affected.

I must stress that I'm totally unqualified to offer you any advice, but if it was me I'd take a little comfort from the fact the odds seemed in my favour.

Hopefully somebody knowledgable or with experience will be along soon, and the consultant will be able to answer your questions and help you better understand the risk asap.

I'm sorry this has clouded the last weeks of your pregnancy - I hope you get a happy outcome.

User3433399 Tue 01-Oct-13 08:58:54

Thanks lost. Once I calmed down a bit I managed to look at the numbers involved and I feel a bit better. The UK stats are for some reason more positive than the US ones, so I'm just going to go with what they say in the UK!

I'm quite worried that once the baby is born he's going to be immediately taken from us for tests, even if everything looks OK from the APGAR examination. I guess there's no point going through the 'what ifs' until I've seen the consultant. Feeling really sad still, so thanks for your kind words.

OP’s posts: |
Giddypants Thu 24-Oct-13 01:35:51

Hello, I had a bit of a freak out during my pregnancy with ds2. Basically I'm a nurse, and caring for a pt who had secondary CMV following chemo. I didn't know she had CMV when I was looking after her, and was told that later, and as I was pregnant (24 weeks) I should get a test to see off I already had anti bodies. Well of course I hadn't so I scared myself silly for months. But during that time I looked up statistics etc, and found that for the baby to have congenital CMV it was most likely to have been caught my the mother in the first trimester. Of those babies born with it 1% went on to have significant problems, so really low risk! but yes I know where you are coming from. Try to stay positive x

farranx123 Thu 15-Sep-16 10:04:03

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?

Any advice/insight would be so helpfull x

Frances003 Fri 23-Nov-18 19:28:24

@LePamplemousseMousse I don’t know if you even still use this site as this is an old post .
But I just wondered what the outcome of this for you was ?
I’m 37 weeks and just had a routine 36 week scan and following this - tested positive to Cmv !
I work with children
I am absolutely beside myself , I feel sick, keep crying and I’m so so so worried there is something wrong with my baby. I feel like this is going to affect our bond all my worrying

stephi81 Wed 09-Oct-19 12:22:13

@Frances003 similarly I'm not sure if you will see this but I wondered if you would mind telling me what the outcome was for you please? I do hope you and baby are well. I am also in this situation and worried sick. My baby is due on 24th November 2019 xx

FranCess003 Wed 09-Oct-19 21:42:41

Hi @stephi81 I actually got an email saying I was tagged so that was good.

So I tested positive so they went back to my booking bloods (at 9 weeks) and tested that blood to see if I had cmv at that point - and if I did , if I had antibodies.

If I had antibodies it would mean that I’d have had the cmv a longer time, which was good because cmv only an issue If contracted whilst pregnant .

Luckily for me I did have the anti bodies, so along with the fact my scans had been “normal” and no abnormalities picked up, they tried to reassure me.
Obviously I still worried ... more then about deafness . But I gave birth to a healthy baby boy, passed his hearing test and is now almost 1.

I really hope the same goes for you, and they can re look at your booking bloods.
It really did ruin the last few weeks of my pregnancy worrying sick and researching my brain out !
Best wishes xx

stephi81 Sun 13-Oct-19 22:37:12

@FranCess003 hi - thank you so much for the replying to me (and apologies for my delay in coming back to you).

That is very reassuring to hear and I am so pleased your baby boy was born healthy and with no issues. It's awful that the last few weeks of your pregnancy were filled with such stress and worry.

My situation is slightly different in that I haven't actually been diagnosed with CMV. However calcifications and echogenic spots have been seen on my baby's ultrasounds and after much researching it would seem that this is a common side effect of a CMV infection in fetus'. Ive been obsessively reading everything I can find and it would seem that CMV is very common amongst mum's who already have pre-school age children (which I do - a son of 2) as it's passed via their urine and saliva. I just cannot believe that we are not warned about this during pregnancy!? This is my third baby and I have never heard of it before. Beggars belief.

So - whilst I am not certain that I do have (or have had at some point in this pregnancy) a CMV infection, it's a possibility, a worrying one. Along with many other worrying possibilities sad . Our specialist appointment is on Thursday so hopefully will get some clarification then.

Thank you again for replying. I commented on a number of ('zombie') threads out of desperation really and you are the only one to reply. I'm just so worried xx

Chaosonthehorizon Wed 30-Oct-19 20:02:34

Hi not surprised you are worried poor you. Nothing to add I’m afraid but I was tested in this pregnancy (my 3rd) along with parvovirus as I had definitely been exposed to that. Immune to parvo but sadly not immune to CMV! Very worried and only 8 wks so miles to go. Like you my others are very young.

Motherhen322 Sun 10-May-20 20:17:08

Hi, just wondering how your delivery went and your baby? I know this is an old post but one I can relate to as I will be tested for CMV again to find out how I was infected with it.Thanks

Flippetyfloppy Thu 11-Jun-20 19:54:49

Hello motherhen
How many weeks pregnant are you? I am 15 weeks and found out I had CMV in very early pregnancy. Haven't been given any information yet as waiting to see the doctors.
Hope you are OK, it is really stressful and when you have a Google of it it is really scary.
flowers
Have you been in contact with CMV action? They may be able to give you some advice/information. X

MrsGJD Wed 18-Nov-20 14:52:39

@Flippetyfloppy

Hi, how are you getting on? I have recently tested for a CMV infection but unknown exactly when I may have contracted. (potentially first trimester) I am currently 25 weeks x

Flippetyfloppy Thu 19-Nov-20 16:53:26

Hello @MrsGJD
So sorry that you tested positive for CMV, it is so stressful. Have you been given much information yet or seen an obstetrician?
My baby hasn't arrived yet but is due any day now! I've been having scans every 2-4 weeks with a fetal medicine consultant. I contracted the virus in very early pregnancy. My consultant told me that I had a 40% chance of passing virus on to the baby but that as it was contracted in the first trimester then most likely I would have miscarried early if baby had been affected and that the infection would probably be showing up on scans by 30 weeks. There is still a chance that my baby has CMV, unfortunately you can't tell for definite from the scans. My doctor said that if baby has been affected it would most likely be hearing loss, blindness or liver issues. Keeping everything crossed that it is ok though. When my baby is born he will need a urine test and some other tests doing by paediatricians and if showing any signs will be started on antivirals.
It has been a very stressful pregnancy, made more stressful by lack of support/access to information due to covid. But I'm feeling positive and optimistic that all will be OK now 🤞🏻
I hope you are ok, let me know if you ever want to talk about it. X

Flippetyfloppy Thu 19-Nov-20 16:59:44

Also I should say that of the babies born with CMV I understand that only about 15% of them go on to have health problems as a result. Paediatrics said they would give antivirals if baby tests positive regardless of whether they have symptoms or not x

Ceejeewillbee Tue 01-Dec-20 20:28:59

Very similar situation here. Devastating as I knew all about cmv and risks. Practising careful hygiene but still caught cmv. Currently 13 weeks pregnant and on anti viral treatment. Desperately hoping virus hasn’t crossed placenta. @Flippetyfloppy how did things turn out for you?

MrsGJD Wed 02-Dec-20 06:03:53

Hi @Ceejeewillbee
Sorry to hear you are going through this,
May I ask why you got tested? Did you have symptoms?
Don’t forget the odds are in your favor and least likely to to have transferred in trimester one than later in pregnancy, although I’m sure you know that already.
Many women will have cmv and be unaware the good thing is you are aware and are having treatment. Many women will have cmv, be unaware and unaffected also, I’m sure. X

Ceejeewillbee Wed 02-Dec-20 07:09:09

Thanks @ MrsGJD
I had no symptoms but had a scare in last pregnancy .... it wasn’t cmv then... but I because very aware of the virus and vowed to have regular testing in this pregnancy. Absolutely floored my test came back positive especially as I was taking enhanced hygiene measures and haven’t missed my toddler on the lips for 2 long years! Remaining hopeful and keeping everything crossed the anti viral drugs work xx

MrsGJD Wed 02-Dec-20 08:04:38

Absolutely stay hopeful, chances are everything will be absolutely fine! Are they certain it’s a primary infection and not recurrent? Did they do avidity test? X

Ceejeewillbee Wed 02-Dec-20 08:22:29

@MrsGJD unfortunately yes, definitely primary infection in first trimester. Low avidity. Just got to keep faith xx thank you for replying x

MrsGJD Wed 02-Dec-20 08:39:39

@Ceejeewillbee
Absolutely keep faith. Just remind yourself how many mums have had this and had no idea whatsoever it’s only so stressful because you have had the test, I understand that entirely as I pushed for the test also. I have every faith all will be perfect for you. Sending love and positive thoughts xx

Ceejeewillbee Wed 02-Dec-20 10:23:52

Thanks @MrsGJD, did you test positive and was your little one ok? Xx

Anon06 Sun 17-Jan-21 11:16:23

@Ceejeewillbee sorry to hear about what you are going through. Are you in the UK? I am in early pregnancy and with a 2 year old at nursery I am freaking out about CMV. I found a place I could have a private test locally and deciding whether to do it. I thought if nothing can be done about it there is no point worrying myself, but if in the UK you can get antiviral drugs then maybe it is worth it?

Ceejeewillbee Sun 17-Jan-21 13:11:35

Hi @Anon06 yes I’m in the uk. Like u and I totally freaked by it with a little one at nursery. I knew I was seronegative from a previous test and absolutely floored when I got it in early pregnancy. Hopefully the antivirals will work. I’m 20 weeks and amnios next week. I asked for cmv test at my bookings. Tested positive and primary infection.

Anon06 Sun 17-Jan-21 13:20:53

Thank you so much for your response @ceejeewillbee. I might try to ask at my booking appointment then. I would rather not make a different appointment in a different clinic as I'm also aware of the increased risk of covid going multiple places. I wish you all the best

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