20 week scan, 2 soft markers - help!

[Zeldagirl]

I had my 20 weeks scan on monday and they found 2 soft markers. A white spot on his heart and enlarged kidneys. They said this increased my risk of Downs Syndrome and offered me an amnio.

After discusssing it with DH we decided we couldn't terminate at this late stage and we didn't feel there was enough justification for risking a miscarriage by doing the amnio. My main concern was that a miscarriage at this late stage would not be a pleasant experience.

The Dr was really nice and I'm sure she hesitated over telling us as the kidneys changed shape 3 times whilst we were in there but they have to mention 2 soft markers.

Structually, the baby is fine. Everything measures fine. Nuchal fold is normal. She looked at the heart in great detail and listened to it and said there was absolutely nothing wrong with the heart apart form the spot. Plus my triple test came back at 1 in 650 and I am only 29.

I just want some advice. I keep thinking I will have the amnio just to clear my mind because I haven't slept for about 4 days. Not because my child may have DS but the fact that I just don't know!!

Everytime I tell someone about the scan they give me this sympathetic look and I just want to scream back at them that it may not have DS it's just s statistic.

I can't go on like this. It's on my mind 24/7 and I feel as if I can't decorate the nursery or anything. I can't even walk near the baby section in asda anymore. It's a horrible situation to be in and no matter how positive my DH is I can thinking how can I enjoy the rest of my pregnancy? Even when the baby is being born I will be thinking does it or doesn't it?

[dippydeedoo]

i cant offer you anything from experience ....but you are growing a baby,people have been told their unborns have all sorts of congenital stuff and they have been born 'normal' do u think another scan would help? is there a midwife who can help you? maybe research it a bit yourself just in case informed is knowledge - meanwhile you really need to concentrate on relaxing your baby is feeling everything you do

[isaidno]

The main thing I pick up from your OP is that you really want this baby - termination or miscarriage is not an option.

Remember that 1:650 chance of Down's is 649:650 chance of normal.

You will love the baby whatever the outcome; sending you a big hug xx

[isaidno]

have you looked at the ante natal thread for due in July? There are lotts of us on it, and a couple of the others have had similar worries / scares.

[ILikeToMoveItMoveIt]

I haven't been in this situation, so this is my opinion but it isn't based on experience.

You say you have both decided not to terminate the pg. However you feel you need an answer to be able to reconcile how you feel about everything. The only problem being that an amnio carries a risk of mc.

Is there any other way that you can be given more information? Will further scans help? Will a discussion with an experienced Ob be able to shed more light on the scan results?

I think you have to decide what you can live with. Can you live with not knowing until the birth? Or do you defo need an answer, but accept there is a risk of mc with an amnio? You both have to decide what is acceptable to you.

Whatever happens you have to be sure that you made the best decision at the time with the information you have been given.

Good luck, I will be thinking of you all xx

[cadelaide]

Hello Zeldagirl.
My situation wasn't really that similar to yours, but my blood tests did show a high risk for DS. All I wanted to say is that as the pregnancy progressed I did feel increasingly positive that, whatever the outcome, we would be able to cope.
What I mean is, you won't necessarily feel this level of turmoil for the rest of the pregnancy.
Hope that makes sense

[Zeldagirl]

I have just spoke to the screening midwife who has made me feel even worse by telling me that these two markers are not picked up very often.

Yet google keeps telling me that these are the most common ones to find......so do the other messages I am finding on other websites.

I think it has just confirmed to me that I have to have the amnio.

[NorthernLurker]

you don't have to have an amnio - but it is the only way to know for sure. So - perhaps you can ask who would do the procedure and what complications have their patients had? The quoted risk is only an average - if you find that your doctor has never had woman miscarry then that would be good to hear wouldn't it? You could also ask for a specific cardiac scan - baby might be in a better psoition that day and you could get more information.

[cadelaide]

Poor you, it's horrid feeling.
But as I said, the feeling did lessen for me over time. Immediately after ds was born I worried that he was ok, that he was breathing and his heart was ok, but when he was put into my arms I was just relieved the waiting was over. Whether or not he had any "conditions" was truly a secondary concern.
I didn't find out for over 24 hours whether or not he was ok, but he was pink and breathing and that was good enough for me. (I apologise if that seems insensitive, fatuous or naive).I'm just trying to show that your feelings may settle a bit, this is all recent news for you.
I'm not anti-amnio, btw, I just feel sorry for your turmoil.

[Zeldagirl]

The hospital did say that there amnio risk was less than the quoted 1%.

The baby had a really detailed heart scan on monday by the consultant who said that his heart was healthy in every possible way. They even listened to it and did a sacn to show the blood flow. It was just this white spot they found in the left ventricle - which is 'apparently' the most common side to find it

[cadelaide]

I don't know what a white spot means.
Dd did have a dark spot in/on her bowel. We had numerous inconclusive scans until she was born healthy.
Will an amnio bring you peace of mind if the white spot remains, I suppose is what you have to ask yourself?.
Here I am trying to help, but I suspect I may just be throwing in more variables to confuse you.

[bodiddly]

they found 2 soft markers in my ds' 20 week scan (heart and brain) and they sent us for a detailed scan a week later. They said they were not unusual but that the only way to be sure was to have an amnio. I decided against it for 2 reasons ... firstly because the risk of miscarriage from the amnio was greater than the risk of the downs (they revised my triple test down from 1 in 3000 to 1 in 500 or some such) and secondly because by my reasoning it would have been 22 or 23 weeks before I would've known conclusively and I didn't think that I could have gone through a termination at that late stage even if I had been told downs was likely from the amnio results. My decision made, I tried as best I could to get on with the rest of the pregnancy without stressing (easier said than done I know). All worked out well fortunately and ds was born healthy .... good luck with whatever you decide and fingers crossed all is well.

[thebluefoxategreensocks]

I'm sorry to hear of the difficult time you're going through. hugs Afraid I don't know anything about the markers or what they mean. But maybe if you can just try and think about the postive things (that the baby is appears healthy & all is well apart from these possible markers), then you'll feel better? I have more than one friend who was told their baby had problems and would likely be ds, and a healthy baby was born. So I hope all goes well for you and the rest of your pregnancy is as stress-free as possible, with a healthy baby in the end!

[seeker]

I had the white spot in the heart too - they called it a "golf ball" They also found a line of fluid in the abdomen that they didn't know what meant. I already had a 1:126 chance of a bay with Downs from the Nuchal scan and my age. I refused all further testing - like you, I wouldn't have contemplated a termination for a non life threatening condition so I didn't see the point. It was an anxious pregnancy - I won't deny that, but ds (7 today) was completely fine.

One radiologist said to me that the scans are so detailed nowadays that they pick up on all sorts of things that a few years ago nobody would have noticed, so there's a lot of ususally unnecessary anxiety caused.

just remember, if somebody said this horse is 126 to 1 against you wouldn't put a penny on it at those odds! 125 of the 126 babies will be fine - and I bet yours will be too.

[cece]

Have you contacted the charity ARC that advises on ante natal testing. I found them very useful to phone and talk to when faced with a similar dilemna.

[shelleylou]

I dont know if this helps but my ds' kidney was enlarged so had to have another scan. So was told he could have something wrong nothing specific. Had the extraa scan and kidney was fine apparently a lot of boys 'hold on' rather than going toilet and this was the reason. Hope yours is something similar

[cadelaide]

By Seeker
"One radiologist said to me that the scans are so detailed nowadays that they pick up on all sorts of things that a few years ago nobody would have noticed, so there's a lot of ususally unnecessary anxiety caused".

Exactly what I was told.

[Rach70]

I was told they had found an isolated echogenic focus at my 20 week scan but that I did not need to worry as it did not increase my risk of downs as it was on its own. All the same, I had another detailed scan which did not find any further markers.(35 with a nuchal scan risk of 1:300 and a triple test risk of 1:260). I was advised in so many words that I did not really need an amnio so we decided against it as the risk os miscarriage was higher than the risk of DS. At 29 weeks a growth scan said growth was fine but the kidney was dilated (9mm). I was advised by a registrar that this was not a problem. I have just had a further scan at 35 weeks and the kidney is still dilated (10.4mm). I now understand this is another soft marker for downs and have got to have a further detailed scan next week. I am very worried by this and cant understand why I wasnt sent for another scan after my 29 week scan if it was an additional marker. I have had such a stressful pregnancy with all this and now the final few weeks are going to be a nightmare again with stress! And it's too late to do anything about anything. Any words of advice or encouragement would be appreciated as I'm really concerned now.

[Rolf]

what seeker said.

My dd1 had a soft marker for edwards - part of her brain wasn't there. We declined an amnio but had lots of other scans and a horrible pregnancy. She is now 3 and developmentally perfectly normal.

In my subsequent pregnancy I told my consultant to "keep your scary soft marker bollocks to yourself!". My mw said she's seen so many pregnancies blighted in this way.

I realise this perspective is v hard to find when you're in the middle of it. fwiw i'd avoid hospital visits if you can. Scans don't give guarantees, just more maybes and worry.

typing 1-handed, sorry

xx

[idontbelieveit]

Hi, I don't have any advice but i had a scan yesterday that showed echogenic bowel which gives increased risk for downes, edwards, patau, CF, obstructed bowel,viral infection of the fetus and growth restriction. We're waiting for cf and viral blood tests and trying to come to a decision about amnio. The odds are in our favour as the chances of our baby being fine are 85% but i'm a nervous wreck at the moment....
Rolf your post made me feel a lot better!

[sixdog]

Hello yesterday we had our 20 weeks scan .All was fine , then we were told that our baby has Hyperechogenic Bowel Mild.Got to see another doctor to find out what its all about. they said it could be nothing or cystic fibrosis . I cant stop crying.I keep thinking i have done something wrong.Our 12 weeks scan was fine. We got a photo but i cant look at it. Its our 1st baby x x x x

[Arabica]

Lots of empathy here. DD's scan showed markers for Edwards syndrome; later on, after amnio came back clear, a scan showed excess brain fluid. I went along with each test I was offeredbut with hindsight, they stressed me too much (and told us nothing helpfullike 50% of children with developmental delay, DD has no diagnosis)
I wish I had refused tests or at least talked to ARC, the charity listed below.
BTW, if you get referred to a specialist fetal medicine clinic, take a friend/DP for support: be warnedthe one I visited (on 4 occasions) was the most appallingly run, with 4-hour waits not uncommon, and the rudest, most patronising medical staff I have ever met, with one fetal cardiac consultant who tutted with annoyance when DD's heart revealed no abnormalityas if we'd been called to a scan specifically to waste his time!
BTW, DD does have developmental delay. But that's just a label. She's a gorgeous, happy little girl.

[Sweetie34]

ZeldaGirl,

I am in a similar position to you and I nodded constantly while reading your post.

I was told at 12 week scan I had a 1:15 chance of DS. It was a shock. I wasn't sure about having any testing at all, becaause I wouldn't terminate eithe way. But, it is awful not knowing. I felt like I was in limbo and stopped enjoying being pregnant and worried instead. I had a scan at 16 weeks and they still couldn't rule out DS. Partner and I decided we wouldn't have the invasive test becasue of the risk. Now that we have made that decision my attitue and way of thinking has turned around.
I have started shopping for the baby and the excitement and anticipation have returned. I haven't ruled out the chance of having a baby with DS, but it isn't the end of the world. He'll be ours!!

[PlumBumMum]

I had double test with dd1 and it came back 1:42, I kept thinking I'm 25 don't smoke etc, but that has nothing to do with it

We decided not to have any further tests, because I didn't want to lose baby

I had many sleeples night and then contented myself but as Sweetie said later in pregnancy worries came back and hosp sent me for a more detailed scan with specialist he found nothing to be worried about.

But on the day of delivery I think I was the only one not worrying about it, I just wanted to get my baby in to the world safe.

She was fine, and shes nearly 8 now but she has had Juevenile artheritis from she was 2.6, so you never know what lies on the road head anyway

sorry if that was abit long xo

[PlumBumMum]

Sorry mean't to say have the hosp asked you to go back for another scan, this might help and ask as many questions as you want as often as you want

[auntyspan]

Hi Zelda. My sister had a 1:30 chance of DS after her bloods and there were a couple of soft markers on her 20 week scan. Her and her DH, like you, didn't want any further tests, so they sat it out. My sister did get in touch with a local DS group however, did loads of reading and research into what help was available, possible problems etc, and became very clued up. When their son was born with DS it was still a huge shock for her, even though she thought she had mentally prepared for the possibility.
She now says that part of her wished she'd had the tests done do she knew what the outcome was, and she could prepare herself and the family better. There was never a mention of termination - it was something that was never considered.

And 1 in 650 is very different to 1 in 30.

Hope this helps? xx