Amnio?? Take Any Advice!

childcaremama · January 2016

Hello June Mom's! I'm a FTM due on June 4th. Yay 20 weeks today! As some of you may know, our daughter is perfect but the placenta is not allowing enough blood flow to her for her to be able to grow as she should. Most of the time they don't know why this happens so just label it Maternal Health Factors (basically my body is not doing what it should).

Sometimes (very rarely) this problem can be caused by the mom catching a virus (just feels like a cold) called cytomegalovirus. If mom gets it 40 percent of babies get it. 75 percent of babies with cmv are totally healthy. 15 percent have hearing loss or learning disabilities. 10 percent have very extreme impairments. The doctor wants me to get an amnio on Thursday.
With the amnio if she tests positive for cytomegalovirus they will give me shots to do that could possibly boost her immune system, thus lowering her risk for the sever birth defects. But the shots haven't been proven to have any effect in studies and we have no idea if I even had cytomegalovirus, let alone if it went to her. Of course I want to boost her chances anyway I can but there is so much going against her that I can't protect her from. The amnio has risk of causing my water to break which she wouldn't survive. I know the risk is small but it's the only thing I can protect her from. The doc says 1 in 400 amnio's cause a stillbirth due to preterm labor. I feel like that's a high number!? My doc says he's never lost a baby from an amnio. I just don't know how I'd ever live with myself if doing the amnio caused her to die. How to I take that risk? Everything else I can't control but this I can.

So I don't want to get the amnio but my husband does in case of the very small cmv virus to dump the shots.
I'll gladly Take Any Advice!!! Thank you!

HBamama2B · January 2016

Im sorry you are struggling with this, it sounds like you've really been taking the time to do your research and evaluate all the pros and cons. I don't have any advice as this sounds like an incredibly personal and complicated decision, but am hoping for the best possible outcome for you and your LO!

VikingGirl12 · January 2016

Like @HBamama2B said, this is such a very personal decision. We found out my daughter has a 99% chance of having DS, but we refused the amnio because we don't want to lose her through that tiny risk of miscarriage.
However, you need to weigh the possible outcomes. What do you think is best for her in the situation? You know the statistics and the chances of her having disabilities, are you willing to live through those disabilities with her?
For us, an amnio wasn't going to help our baby in any way, only hinder. For you, it's a little different.
I think whatever decision you and your so decide will be the best decision for your family. I know it's a hard decision to make.
Sending prayers during this difficult time!! Please keep us updated!

LizM61409 · January 2016

What is the risk of complications from untreated CMV? Is it higher than 1 in 400? I know you would feel guilty about a loss if you were the unlucky one, but you also need to consider how you would feel if you declined treatment and your baby was born with serious, potentially preventable problems and weigh that against the risk of loss

catherinekate · January 2016

I've heard recently that amnios are much safer than that 1 in 400 statistic. Technology is much better and I don't think many studies reflect that -- I've heard the risk might be as low as 1 in 800 or 1000. Still, it's a very hard decision to make and lots of factors to consider. Let us know what you decide. Thoughts & hugs.

mar101483 · January 2016

I had a CVS test done, where they went through the my abdomen. I was told it's similar to amniocentesis. I will say, I found it extremely painful and I had pain at the needle site for days and bruising for weeks, but no cramping or spotting. If you decide to have it done, I would recommend bed rest for at least 3 days afterwards. I had mine done on a Thursday and stayed in bed until work Monday morning.

VikingGirl12 · January 2016

@catherinekate yes we were told around 1 in 900

huskypuppy14 · January 2016

Can they test you first, to know if you even have CMV? I think a simple blood test would tell you. If you don't have it, then your baby won't have it. It seems pretty crazy to go right to Amnio if you don't even know if you have this virus first.

Bee112309 · January 2016

I was also interested to know if it was possible to test for you having had cytomegalovirus, before going to an amnio. Also, are there risks/side effects of giving you the treatment if she doesn't have the virus? If not, then you could go forward with the treatment without the risks of the amnio. Just a couple of things that came to mind.

PBear93 · January 2016

I second @Bee112309 and wonder if they can just give you the treatment without doing the amnio.

cdnvb4 · January 2016

I agree with previous posters. Is there some reason you wouldn't want to take the immune-system-boosting medicine should your baby not have cytomegalovirus? If not, I'd skip everything and just take the medicine. That seems to help avoid the risks of both the amnio and of the illness.

vulpini · January 2016

I had the same question as PPs. Why are they not looking for antibodies to the virus in your blood to determine if you even had it? That seems like the obvious thing to do before amnio. If you did contract the virus, is there any reason not to just go ahead and get the treatment?

618mom22boys · January 2016

*lurking from Sept16*

I just want to say that CMV is actually not very rare at all. It's just that most people have never heard of it, which is very unfortunate. It is more common than Down Syndrome. And it is the #1 cause for childhood deafness. Not only is that deafness just one of the problems but many are born with microcephaly, end up with CP, feeding problems, and other complications. I am glad to see that the ladies on this post have heard of it though! It is a step in the right direction.

Like others have said ask to be tested to see if you have a current infection or have had one in the past few months. If so I would start the treatments right away.

My 1st was born with cCMV 16 years ago. I opted out of an amnio but only because than there were no treatments available. But had it been available I would have jumped at it!! It can cause all sort of problems for babies and if there was a chance I could have stopped it I would have. (I was offered an abortion instead, which I also denied) There is also treatments for after the baby is born to stop the onset of hearing loss. Again we were not offered that 16 years ago.

I am a part of a very great FB group for parents with children with CMV. If you would like to be added send my a pm.

https://www.nationalcmv.org/

violetmarie61516 · January 2016

I would think that even if they can't test you for the actual virus since it may not be active any longer, they would still be able to test you for titers. It would be able to tell you if you HAD it at all. If the titers are negative then you don't and did not have it and won't have to worry about an amnio.

Lyette1206 · January 2016

Just wanted to add that the risk of stillbirth due to an amnio is also linked to the experience of the person performing it.
Not that I'm advocating that option. As PP have mentioned, I think you have some other questions to ask and after that it's up to you and your partner to balance the pros and cons. Best of luck.

childcaremama · January 2016

Thank you so much everyone! I'll definitely be begging for the shots without the amnio. At this point I can't justify the amnio risk without further indicators. With the placenta blood flow problem we are still facing a very high risk of stillbirth. They are planning to admit me at 24 weeks so they can monitor her heart rate and deliver her as soon as it starts to drop. Praying for growth at our ultrasound on Thursday and that she won't have fallen further behind in growth. Thank you for the website @618mom22boys!!! I will be begging for the shots!

dennyandlee · January 2016

@childcaremama Just thinking about you and your little girl. Hoping your ultrasound went well yesterday!! Praying for y'all!

js8812 · January 2016

Lurking from May. I agree with everyone else that you should be tested and try for the treatments without the amnio. However, if they refuse the treatments without the amnio, I wouldn't write off that option. Last pregnancy, I had an amnio and it wasn't that bad. It was a long pinching feeling and a bit of a cramp... I got really flushed and light headed because that's how I usually react in those kind of situations (navel piercing, blood draws, etc), but I felt fine afterward. It was a little sore at the site where they took the draw, but I carried on as usual without any spotting. There was some minor cramping though.

This is a personal decision and whatever you decide will be the right decision. Fingers crossed and prayer sent!

mclorn · January 2016

My OB ordered a simple blood test that checked me for CMV.... came back negative so I don't have anything more to add then that.... best of luck xoxoxo

peregrinefalconx · January 2016

PPs have said this, but I have also understood that docs are still using old stats on issues with amnios and that they are much safer these days. I would also question whether you could do the shots without a firm diagnosis and any risks there.

Tough, tough decisions. Good luck.

cmillar36 · January 2016

I had an amnio this pAst Monday. I originally said I wouldn't do it. But when we were told the risks and what was going on with baby went ahead. I don't regret the choice. It hurt a little. But wasn't that bad.

VikingGirl12 · January 2016

Please keep us updated on the results!

childcaremama · January 2016

Overall very good news! Much, much, better now than two weeks ago. He says quitting work was/is the best thing for her. She's in the 7th percentile, so tiny and still not good size wise. She did have a growth spurt, particularly in her brain which the doc said he was very relieved to see. Last time her brain was less than the 5th percentile and this time it's in the 15th!!! He said he was VERY unoptimistic last time about her making it even to 24 weeks. He said babies with placenta's like I had last time do not make it. There was Zero blood flow through the placenta/umbilical cord between my heart beats last time. Now The placenta blood flow has improved almost miracle level!!! Now he is optimistic for a much healthier, although tiny baby. Things are at very high risk of reversing and going back to bad blood flow. Also if she falls below 5 percentile that'll be considered very concerning. So hopefully she'll hold onto her 7th percentile.

childcaremama · January 2016

Also I held off on the amino but am getting treatment for the cmv just in case. He doesn't think it's cmv near as much since things improved!

dennyandlee · January 2016

So glad to see this update! Prayers that she keeps improving!

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