Cmv exposure

[chilternchica]

Hello

I have a 5 and 6 year old and pregnant with my 3rd. We visited my sister in wales twice I(at 14 weeks and 17 weeks for me), with our kids (hers are 2 and 6) all playing together and I met her new baby and held her. We then at all together, with crisps in bowls and the kids sharing the bowls. I don't remember anyone drinking from my water glass but who knows it was one of those busy family days. Now the baby has been diagnosed with CMV , 9 weeks later. I'm really panicked. What are the chances of me catching it? If the baby caught it after birth from her siblings, could they have passed it to my kids and then my kids to be (my kids are always drinking from my water bottle. Will stop this now). Could I have caught it from my sister or their kids by sharing bowl food like crisps? I already have a high needs child and could not cope with another. I'm waiting for blood tests but not sure what they will tell me, as any active infection would have disappeared by now? Or not? Any experienced would be appreciated. Cheers.

[chilternchica]

I just found out I have igg reactive but not igm so
I dont have an active infection but I do have immunity, issue is I don't know if it's because I contracted something during pregnancy
Please does someone have any experience and is anyone able to help? Thank you

[User79853257976]

It says online that the incubation period for CMV is about a month. So if the baby’s symptoms started over a month after your visit, it would seem she/he wasn’t contagious when you held her. Have the other children been tested?

[chilternchica]

No I don't think they have. It's very difficult because they are in turmoil and not really responding. I'm wondering if the baby caught it 6 weeks ago after being born but maybe then it's siblings would have had it

I'm now paranoid about previous exposure even with another 2 year old because she came over and was switching around all our glasses while the mums were talking and after that just was shivery and freezing for 2 weeks
I put it down to first trimester as I had awful nausea.
Frustrating no one is advising me what to do: the gp said I need to see an obstetrician and it's too specialist for him. The obstetrician is away but on a brief exchange basically said well you know there was past exposure and probably not in first trimester so not much you can do
Really is there not ?
I don't think I can leave this to "chance" and be unprepared post labour
Would you do the amniocentesis?

[chilternchica]

Hi everyone, I wanted to followup for advice.
My Igg (antibodies) test came back positive. My IGM (active infection) came back negative. I dont know when I caught it though - eg years ago (i have other children who have been to daycare) or during pregnancy.
I have had my 20 week scan - normal. I had a detailed morphology scan yesterday- normal, baby measuring 75%, head 44%, and AC/HC 11% (is this concerning? or just a big tummy? the sonographer was not concerned knowing my CMV concerns).
My concern is whether i am doing all i can. I read about anti virals. The dr said that even if baby does have it - there is nothing we can do. is this true?
i am beside myself with worry- should I have an amniocentesis?
If its confirmed negative - i would be so releived and can start to get excited again.
if HEAVEN FORBID it is positive, can i get baby out early, can i get antivirals ot help baby?
what would you do?

Does anyone know statistically what chances are of me having it given the above?

I am awaiting avidity results but am told these wont make much diffrence to what i know already due to the timing of my exposure, if it shows as "high " it doesnt rule out that i had it in pregnancy or not.

[parsleydog]

Hi - I contracted CMV for the first time when about 6 weeks pregnant with my third child. So, the worst possible time. This was about ten years ago, so I can't remember the exact stats but I do remember that I looked into it very thoroughly at the time, and the statistical chances of a very poor outcome (life changing disability or death) were very low - I think less than 5%. The chances of milder problems (learning delays) were quite a lot higher but I felt that those issues weren't so awful that I wouldn't terminate, and therefore I didn't risk the amniocentesis (no judgement for anyone who would have done differently, however).

The chances of it all being absolutely fine were the highest of all. Especially after than 20 week scan and head measurements looking good.

Therefore I would try not to worry. (Obviously impossible!)

They also did urine tests on my baby when he was born, and hearing tests just to be sure - but this was because with me they knew for sure that I had definitely contracted CMV for the first time during that first trimester.

Hope this helps to reassure you a little. He's a very healthy and happy nearly 10 yr old now

[chilternchica]

Thank you so much
I really appreciate your response. My anxiety is through the roof, not helped by working long hours and not feeling supported or like I have any statistics to reliably base any decision on, I
Nervous of tempting fate but talking to friends about it (eg listing my worried and fears ) and also nervous to relax and start enjoying pregnancy with the risk that it's a longer fall if I'm unprepared for the worst. I can't. Understand why we don't screen mothers for this early on so we can rule out such worries should they be exposed or to understand if it's first time exposure or not for example,
Baby had its hand in front of its face in the scan and I read it can be a ssign of autism or brain damage (can it !?) and I can't stop thinking about it. I can cope with anxiety but not with these potential
Outcomes right now
I'm just looking desperately for reassurance but can't seem to find anything tangible -perhaps because it's just not possible

Thank you so much for your help. And taking the time to share your experience.

[Katherina198819]

Hi!
I'm sorry you have to worry about this.

I had a cmv scare during my pregnancy. They found an echogenic bowel on my 20-week scan. After the blood test, my igm came back negative, but igg positive.
They sent some of my blood to the lab from my 8 weeks midwife appointment to compare the numbers. At 8 weeks, it was still igg positive with the same level of antibodies, which means I had cmv before pregnancy.

Did your hospital do the blood test? Can they send an earlier sample of blood? (I didn't know this before, but apparently, they always keep some extra blood on the lab from earlier appoitements for this reason).

In terms of the amnio: I researched cmv like crazy while I was waiting for the resoults. The problem is, even if you had it and you passed on your baby, and the amnio confirms it- you won't know anything for sure.
You can have a complitely healthy baby, or it can be complications. Going through the amnio won't change a thing, really.

I think you most likely got the cmv before the pregnancy - just like most of us. Even if you have been exposed during the pregnancy, the chances are that you will have a healthy baby is much higher than a baby with complications.
There would be other soft markers on your scan if it was something serious - at least that is what my specialist told me.

[chilternchica]

Thank you@Katherina198819
where I am, they do not keep bloods. tbh its my fault, I didnt register anything until quite late due to some personal reasons. they never tested me for cmv or anything until a few weeks ago and they told me they didnt keep the blood.
If i get the avidity test back hopefully soon, shall I ask them to test again? how long between tests do i need to wait?
perhaps that is a better option.
If the avidity is high, they said that it would just show i had it eg 3 months ago. but it doesnt rule out that I didnt have it at eg 6 weeks pregnant (worst time of course :/ ).
im beside myself with worry and also dont want to invite anything negative into my life by forecasting awful scenarios.

[Katherina198819]

Yes, I think it has to be around 3 months between the tests.

Is there any way you have been tested for cmv before pregnancy? For example, I had a neck cyst 7 years ago, and I found out my GP sent my blood to test for different viruses, including cmv (before we knew it was a cyst).
Maybe contact your GP and ask if there is any cmv test done previously? I know the chances are low, but you never know.

Did they offer you more scans?

[chilternchica]

There is no way. I contacted my GP and they have no record. I don't think I have ever been tested. I thought in an extreme I could test my children to see if they have any antibodies but I imagine that isn't probably
The right route as taking blood from 7 year old
Isn't advisable
I'm still waiting on the avidity testing. It's been 1'week so far and now
I'm thinking it
Won't tell
Me
Much anyway

No more scans-I have one booked in 4 weeks but I will be 27 weeks by then

[parsleydog]

Ok, I have delved back into it for you!!

Here is a study that looks like one of the ones I remember reading.

www.ncbi.nlm.nih.gov/pmc/articles/PMC7482684/

It says that if infected in the first trimester, the chances of you passing it on are roughly 30%. So, 30/100.

If that has happened, then 80-90% of babies will be asymptomatic. So, call that 27/30.

Of those asymptomatic babies, 8-15% will develop complications later, mainly hearing loss. So, about 3/27 (or, 3 out of the original 100 - 3%).

40% of the symptomatic babies would have more serious problems.

Symptomatic babies = 4/30, so 40% of that would be fewer than 2, i.e. less than 2%. Even then, issues are mixed - it's not that this 2% all have life limiting issues.

So, 95% no problem; 3% mild problems, 2% more serious problems.

I used to repeat these numbers to myself like a sort of mantra.

[parsleydog]

Sorry; symptomatic babies = 3 babies out of 30 so the 40% is closer to 1 than to 2.

[Katherina198819]

I heard about a drug called Valacycovir, which might help reduce the risk of transmission to the baby, but I'm not sure if they use it in the UK. Also, they have to know for sure if the baby have it, so I guess you would need an amnio to confirm it.

[ZuliKyanLarsFoz]

Where are you located that they don't keep booking bloods? I've worked as a midwife in several countries and its standard that they are kept. Honestly, I wouldn't have an amnio if I was IgM negative and you've had a normal scan. Obviously wait for your avidity to make the final decision but if that is high then you can be reassured that your infection was in the past. We have a lot of women referred to us with concerns regarding CMV and the overwhelming majority are totally fine. Infection around the time of conception is most risky.

[chilternchica]

Thank you everyone. @parsleydog wow your understanding of statistics and ratios is so impressive. I am not sure I even have the brain power to understand how the calculations but is asymptomatic means - never any symptoms? 95% no problems fills me with hope.

@Katherina198819 I have heard of the anti virals. . my doctor here - malaysia - does know about it. but they all seem anti the anti virlas (some said they dont necessarily work; some said they can cause other risks which they wouldnt specify but when i google i think it can cause a risk of cancer for children which I expect you wouldn't put on a baby without knowing if it was battling any other serious risks)

@ZuliKyanLarsFoz I am in malaysia. They dont keep any bloods. Avidity still not back. its very hard. ive spent the weekend at home sorting cupboards. but i have a really intense work week next week so need to get myself togeher and sleeping by monday. but every time i get an email I panic its my doctor and go through a wave of emotions before looking.
thank you for your advice - I think you are right and with Parsley's statistics, if i have extra scans and they look good thati s good news.
what I didnt feel confident with at the last scan was baby's HC/AC is 11%. or 1.06. Is that normal? The dr saidnot to worry about it. Tummy is big. HC smaller. I think 45 %. tummy 93% .femur is 44%. BPD i think is around 80% and HC around 50. So individually is it okay? my DP and I are both tall so I was surprised at femur length. but again i feel im clutching at all data points avaialable for reassurance

thank you lovely mumsnetteers for replying.

[parsleydog]

Hi - asymptomatic means, not showing symptoms (but could be that the virus was still transmitted).

Basically - long story short - 95% totally fine; 3.5% pretty much fine, 1.5% not very fine.

And all of that is if you even contracted it for the first time in the first trimester, which you may well not have done (most people, especially those who already have young kids, have had it before).

[parsleydog]

Sorry - in this study, they're talking about asymptomatic meaning virus was passed on by no symptoms showing at birth.

[chilternchica]

Hi everyone, @parsleydog thank you so much for your response its so helpful.
I just got avidity back (its been 2.5 weeks!) it is showing IGG avidity: 0.81. I dont know what this means and my doctor is on holiday. Does anyone know what this means? thank you

[User79853257976]

@chilternchica

Hi everyone, @parsleydog thank you so much for your response its so helpful.
I just got avidity back (its been 2.5 weeks!) it is showing IGG avidity: 0.81. I dont know what this means and my doctor is on holiday. Does anyone know what this means? thank you

I’m not a doctor but I did a quick search and it said 0.6 or greater suggests infection was more than 3 months ago.

[ZuliKyanLarsFoz]

I'm used to seeing avidity results expressed as a percentage. Does it have this written on the report anywhere?

[chilternchica]

thanks everyone. 3 months is sort of not answering the quesiton...! its so frustrating. I also saw 3 months +. But I would stil have been pregnant then.
Does anyone know when the IGM active infection turns "negative" ? I was wondering if that would help.
There is no %. I haven't actually seen the report just was emailed that my number was 0.81.
so i dont know :/

[User79853257976]

But weren’t you concerned about a particular period in which you know you were exposed to it? Wasn’t it less than 3 months ago?

[chilternchica]

It was at 7 week, 14 weeks , 18 weeks

[chilternchica]

I had the test at 24-25weeks
So it eliminates all but one "known" exposure