CMV in pregnancy

[Lombriz]

I have recently posted about our difficult situation after bad 20w scan but wanted to ask specifically about CMV. It was found in baby’s amino fluid and my booking bloods showed that I already had it week 11 which I understand is the worst time. Has anyone had this experience and what did you do? I’m trying to read and it sounds like risks are very very high for us. But doctors want me to start antiviral treatment and do scans every week. They have told me they would approve termination all the way up to 32 weeks. But I’m not sure it is wise, if they tell me at 32w that yes the brain shows serious impact and baby will be severely disabled, how am I supposed to terminate at that stage?? I’m not sure I will be able to, it’s already very hard now at 22w.

We have a 4yo to consider and the fact that we have no family in this country to help if we do end up with a disabled child. My preference is to do TRFM but I keep wavering and doctors suggestions that we should keep trying makes it so much harder.

I would love to hear if anyone else has been through CMV and what did you do.

Hi Lombriz. I wanted to reply because I am a both pregnant myself, and a virologist - I worked with CMV in the lab from 2015-2022.

I am sorry to hear about your congenital CMV (cCMV) diagnosis. CMV action, which I think you have found, is a great source of information.

As you say, infection in the first trimester is most likely to lead to long term consequences https://academic.oup.com/cid/article/69/9/1526/5267872

CMV is problematic because infection is life long - the immune system cannot clear it, nor can antivirals. Antivirals can only stop the virus from replicating (copying itself even more). Studies of trying to use antivirals in the third trimester to stop deafness developing after birth have mixed results. Sadly antivirals cannot undo damage (eg to brain) already done. But we are also bad at detecting which foetuses with cCMV already have problems before birth OR which will go on to be babies with problems after birth.

This is a long way of saying what you have already concluded yourself - it will be very hard for a medical team to give you the certainty you would like when making this very difficult decision. My heart goes out to you.

@Herpesvirologist thank you so much for this. And oh my god, these numbers are so much worse. So over 30% of babies end up neurological impact, this is way too much to be taking that risk. I guess one thing the study doesn't show is how many of these babies were already showing symptoms on the ultrasound. Otherwise, I'm not sure why my medical team isn't thinking that TFMR is absolutely the best way out here. I'm at King's btw, with Prof Nikolaides directly involved in our case, so we're supposed to be getting the best care possible, which just makes so uncertain if we do need to do TFMR now or try what the doctors are suggesting.

As long as they keep giving us hope, it is very hard to give up.

It's so high because they include hearing loss with the more severe possible outcomes. But cCMV is ( I think?) the most common cause of sensorineural hearing loss in under 4s.

It sounds like you already have a lot of clinical support, but it might be worth asking if you can talk to one of the virology consultants - or find out what advice they have given your team.

Hi @Lombriz, I remember your other thread and glad you’ve got some good advice here from @Herpesvirologist. Very relieved to hear your hospital will approve tfmr for you late on.

I don’t have any wisdom on CMV specifically. But I will say that when I was in a similar position of uncertainty, I felt at the time that I needed to make a decision immediately and that it would get harder and harder the longer I waited. The wait was indeed absolutely excruciating (and I was earlier than you; there are third trimester tfmr ladies on the Arc forum should you end up following that route). However (and I know this is very individual), I was grateful that my baby was big enough (though still tiny) to give birth to, hold etc. I’m 8 months on and although I still feel very sad about it, and will forever, I also cherish all of the time that I had with her.

I suppose what I’m trying (badly) to say is that, although it seems like it’s really important to make a decision right now, perhaps it is ok to sit on it a bit.

Also, I know this may seem distasteful and I apologise if it’s not helpful, but (iirc) once you get past 24 weeks you’ll be eligible for maternity leave (potentially useful if you’re employed and might otherwise only get sick leave etc).

And I am really truly sorry you’re in this position.

@Dinosaurus86 thank you for sharing and I'm so so sorry you had to go through this.

The issue of timing is definitely something I'm thinking about. We had to travel abroad for family reasons after I did all the tests (it was a tough decision). And now I'm blaming myself for delaying things, and prolonging the agony. Because with every day I feel a little more attached and more reckless to just take a chance (it's completely irrational, but I have moments when I want to forget about everything I know and pretend I'm having a normal pregnancy).

So I'm not sure if it was such a good idea to wait or not. Maybe we will be more in peace with our decision as we would have made a million circles and we always ended up in the same place.

This is so desperately sad.

Hi Op,

I'm so sorry you are going through this. It was almost 5 years ago to the day that I made the most heart breaking decision of my life and terminate my much wanted second baby at 31 weeks. I got a late diagnosis of CMV at 28 weeks after months of being told the baby was "just measuring small" and after they finally did some investigating they found out I had actually contracted CMV very early on in my pregnancy and the baby was severely impacted. I had the amnio test and the CMV was very high in the fluid. I also had an MRI which confirmed the baby's brain was severely affected and if we had continued with the pregnancy the baby would be born with brain damage.
We had a 2.5 year old DS at home and we had to consider how having a sibling with such special needs would affect him too and we also just knew we couldn't knowingly bring a brain damaged child into the world.
I'm sorry this isn't what you want to hear but unfortunately we got all of our information and diagnosis far too late and we made our decision with all the information we had.
The drs obviously wouldn't have let us terminate so far along if they weren't sure of the severity of the CMV and that's what got me through the whole thing. It was obviously absolutely awful, heart breaking and traumatic but we got through it. I then went on to have my beautiful DS 2 a year later and the only good thing is that once you've had CMV once you can't get it again so I knew it couldn't happen again.
Sending you lots of love and wishing you all the best xx

@Roseinbloom20 thank you so much for sharing your experience and I'm so sorry about what happened, it's just so awful. And such a shame it took doctors so long to diagnose. Can I ask if they didn't see the abnormalities in the brain in ultrasound before? And no other signs of infection apart from the small size?

Like you we have already a 4yo, and no family nearby, we absolutely not in the position to raise a severely disabled child. But doctors keep giving us hope and saying that if they're not seeing things in ultrasound (and MRI at 32 weeks) then risks are only deafness. I don't know what to do with this information, I don't know if I should wait and hope (its been a week so far and it's agonising wait for our scan in a week). But I feel it will be much harder to go for TFMR at 32 weeks rather than 24...

@Lombriz no they didn't have any indication that she had brain damage until the CMV diagnosis and then the MRI confirmed it. The ultrasounds we were having were just growth scans that took measurements and showed she wasn't growing and had a small head. At first they thought it was because me and DH aren't particularly tall or big people she was just a small baby. I had my 20 week scan then they said come back at 28 weeks (we had no idea at this point so was t particularly worried) then at the 28 week scan the shit hit the fan and they referred us to Kings to have a proper neo-natal dr scan us and run more tests. They explained that they had gone over my records and bloods from my first appointment and to now and that the CMV had flagged up so they offered an amnio which I agreed to as I wanted answers and then that came back very, very high with the visits in the fluid. Then they offered an MRI but by this point it was two weeks of waiting for results and appointments but I had that at 30 weeks and then the results showed the markers on the brain and the drs explained it was a very bad case. We were unfortunately that one in 1000 case that was so severe as we were told that it can be mild and cause problems with hearing or other milder issues but our case was much worse.
I'm obviously very angry that it got to such a late stage until we had a diagnosis however because it was so late and we had all the tests available we got a straight answer and so based our decision on the results. I feel so bad for you being in this limbo, if you choose to have a TMFR then any stage will be horrible but the hospital should make you as comfortable as possible and you will be in a private room and you will have as much time with the baby as you need and you'll receive a memory box and photographs if you want them. Feel free to message or as me any questions if that's the decision you make. The whole situation is utterly horrific and I'm sorry you're in this position too. Would they not give you an MRI now? Rather than make you wait and be tortured with worry for more weeks than necessary? xx

@Roseinbloom20 ,as drs explained to us, there's not much point in doing MRI at this stage as a lot of brain development happens later on. So even if MRI comes clean now it can still show brain damage at 32w.

I also contracted CMV early on in pregnancy so our chances are not great. But baby isn't showing the usual symptoms of CMV, instead it has additional abnormalities which at best will require surgery in the first year of life (drs believe this is not connected to CMV), which is why they wanted to do more tests after 20w scan and found CMV by chance.

We are still waiting for full results of genetic testing which might show the baby has an additional disorder but it might come clean too.

Yes, the limbo is horrific, and large part of me feels that given that we have a number of potentially life limiting issues maybe this is a sign? But it's definitely hard to make the decision given that there's still a lot of hope to hold on to.

We have a scan next week and meeting with some drs (we're also at kings) and I think we will need to make a final decision then.

Thanks again for sharing your experience and kind words. It's such a lonely place and it helps so much to hear we're not the only ones going through this.