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foxy

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1

Monday, September 11th 2006, 7:38pm

** NUCHAL TRANSLUENCY & DOWNS: CVS/Amnio/NT Measurements questions **

Hi,
I've just my results back today from the maternal serum screening for Trisomy (blood test for Down's Syndrome etc.)

I'm really freaked out and upset by this, especially not knowing what it means and how bad it is? This is what it said:

Your biochemically calculated risk for Down's Syndrome is 1 in 301

This can be compared with your age related risk of 1 in 556.

I rang the antenatal unit and my midwife will try to speak to me tomorrow, I also have an appointment Wednesday with her too. I know I'm on the verge of been at a high risk at 33 (17 weeks preg) but I feel really down now about this. I'm pretty sure I don't want the amniocentesis I don't want any risk but can any one help me explain this if you have had similar problems as me or advice to offer.

Sarah x

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Monday, September 11th 2006, 7:51pm

Sarah I had a high risk of downs with my age (39) & decided not to have to trisomy tests as they can give misleading results (my midwife told me they can give false high risk levels). Instead we went for the nuchal scan which measures the nuchal fold at the bottom of the baby's neck - anything over 4mm indicates a higher risk of downs. plus they check the face for evidence of the nasal bone, an absence means a higher risk. Together these brought my risk down to 1 in over 700 which is still a lot higher than someone 10 years younger :rolleyes:

Alll these factors can still only indicate a risk & can't tell you for definate, only an amnio can do that. Still if you convert your risk factor into % it makes much more sense as 1 in 301 sounds high. It's actually much less than 1% chance of your baby having downs which is much more manageable & easier to relate to.

It is scary to be given these figures without having them talked through but you do need to discuss them with your m/w & get some reassurances from her & once you have the facts decide what further tests you have or whether not to have any more.

Please do try not to worry, in most cases everything is fine even with a high risk factor.

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Monday, September 11th 2006, 7:56pm

Sarah, I'm sorry you've had these results with no explanation of what they mean. How awful for you.

I think you really need to speak to the midwife about the results as they can incredibly misleading. Never have I come across a test which has caused so much panic for parents as these 60% accurate blood tests which give a result as 'slightly, could have, possibly, might have downs syndrome!'

I do know lots of people who have had the test and spent weeks and months worrying about a baby who has been perfectly normal.

Please try not to worry. I know it's hard but really the accuracy of these tests leaves a lot to be desired.





foxy

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Monday, September 11th 2006, 8:15pm

Hi Bells and Bagpuss,
Thanks for advise you have both made me feel better, I will quiz my midwife tomorrow. I wonder if they could offer me an earlier scan (my 20 week is on 3 October) to look for neck and nose indication of possible risks for downs.

Sarah xxxxx

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Monday, September 11th 2006, 8:16pm

Also Foxy remember that a 1 in 301 chance of Downs means a 1 in 300 chance that your baby doesn't have Downs.





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Wednesday, September 13th 2006, 7:58am

hI,

Just to add my two pence worth.

We had twins and our nuchal results were baby a : 1 in 1020 odd and baby b : 1 in 152...

So we were worried, really worried, however when speaking with our consultant (Prof. Fisk) he advised that they are considering stopping the nuchal translucency as it created more worry than was necessary. In both your case and ours, the % risk is SO small. I echo everyone else's responses above.

Best of luck and Im sure everything will be just fine..

Good Luck

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Wednesday, September 13th 2006, 5:04pm

Downs/Spina Bifida blood test

Hello

I need a little advice. When we seen the midwife yesterday we had to say if we wanted to have the triple blood test for downs/spina bifida and I cant even remember what the 3rd is. We said we wanted to have the blood test and they asked our reasons why. I explained that we just wanted to be prepared mentally incase the baby may have a problem. They said if the blood test shoed something up then it could be a mistake and I would then have an amnio which runs the risk of miscarrying a healthy baby. I told them I would never agree to an amnio and our whole reasoning behind it is so we can prepare ourselves should something be wrong.

She made a good point and said if we dont follow through with an amnio there is no point in getting a blood test as we would just worry more for more than likely no reason as I am already low risk due to my age. We now dont really know what to do - I would never put my babys life at risk I just like to be fully informed.

I noticed someone on here had results that showed they were slightly higher risk and I seen how worried she got and it sunk in what the midwife meant as it is very unlikely anything will be wrong.

What do you think? My app is on the 26th and we have said no for now but can change our mind if we want to proceed. It does seem silly when it would make no difference to us if the baby had a problem - I am more doing it hoping I get wonderful results and dont need to worry the rest of my pg. What would you all do???

i


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Wednesday, September 13th 2006, 5:35pm

I was told by my m/w that blood results are pretty unreliable & can false high risk factors so we chose to go for the nuchal scan. This is done between 11-13 weeks & checks the nuchal fold at the base of the neck (this is the best time to measure it) & the face for evidence of a nasal bone. The nuchal fold should be 4mm or less to bring your risk factor down however you can still get high risk factors & go on to have a normal healthy baby. The results give a risk factor not a definate, the only conclusive test is an amnio.

For me personally with my age being the main risk factor I wanted to SEE evidence rather than have blood test that may or may not be accurate. The nuchal scan with blood test has an 85% accuracy but we chose not to have the bloods done, after all in percentage terms our revised risk factor was 1 in over 700 (much less than 1%).

Compared to 1 in over 1000 or 2000 which younger ladies were getting my figures seemed really high. But like I say in % terms it's minimal but there is a small % who do have problems.

I think you have to weigh up what 'risk factor' you are comfortable with. For me it was just that it went down from my age at 38 to someone afed 32, good enough for me. I too wanted to be prepared for anything unusual but it's up to each person to make up their own minds as long as you are fully aware of the facts.

Nuchal scans are not free in every area but I thought mine was well worth paying for.

HTH Hazel?

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Wednesday, September 13th 2006, 6:52pm

I too had a nuchal scan done, mine was at 15 weeks - in derby they do them upto 14 weeks, but they didn't seem over concerned that I was abit over. The place where Vickimarie had her 3d scan done may well offer them privately if you ask. :))

I'm like you - if the results came back with something wrong, I wouldn't consider termination but I like to know what I'm facing.

xxx








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Wednesday, September 13th 2006, 8:51pm

Theres a website somewhere that explains the tests and the risks and gives you advice on whether to have the tests or not. Will try and find it.





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Wednesday, September 13th 2006, 8:53pm

Here we are:
http://www.arc-uk.org/index.html
Will put it in the links section so others can find it in the future.





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Wednesday, September 13th 2006, 10:48pm

Hazel

I didnt have the test done for that exact reason - I like you only wanted it to be fully prepared - wouldn't act on any result - so we decided not to bother having the test as it was pointless and would only let us worry until we got the result and then possibly worry unnecessarily if the result wasnt what we expected.

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Thursday, September 14th 2006, 12:18pm

Hi Hazell,

I couldn't have the triple test as apparently it isn't accurate when carrying twins, however I have refused all other tests, except scans, I did this as I know I would worry myself sick afterwards if it showed any abnormalities-and I too wouldn't act on any result so it did seem a bit pointless to go through it all.

Good luck with your decision-nothings ever easy is it??!!!

HHxx
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Thursday, September 14th 2006, 6:14pm

Thanks everyone - we have decided not to have any of the tests - had a talk about it today and as it the results would make no difference we dont see the point. Baby has a lovely nasal bone that we have already seen so that sounds good on the downs front and I have been taking folic acid for years so that should help with the spina bifida. He what will be will be, I worry anyway so some daft blood tests wont change that - thanks everyone xxxxxxxx


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Thursday, September 14th 2006, 6:27pm

I think your he will be a she though!!! Get bidding on my ebay stuff woman!!! :D

xxx








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Thursday, September 14th 2006, 6:34pm

Awww Hazel :))

I see you've already made your decision so don't need any advice but I just wanted to say that I agree with your reasoning.

I chose to have no tests other than scans as they can be very misleading and I agree with what your midwife said. Oh and no, the tests don't stop you worrying... the only thing that stops you worrying is when you have the baby in your arms.... that lasts for about 3 seconds until you realise you have a whole lifetime of worry ahead of you :D.





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Thursday, September 14th 2006, 7:46pm

I agree totally with your reasoning too hon. We did have the nuchal scan but purely from the point of view of my age it was sensible to do so. We would have taken the risk no matter what & not had the amnio either :P

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Thursday, September 14th 2006, 10:51pm

Hi hazel,

I chose not to have the blood tests too. My reasoning was the same as you. I've wanted this baby for so long and there is no way i would have gotten an amnio if the tests showed i had a high risk so i didnt see the point in putting myself under the strain and stress if the tests did come back with a high risk. The way i look on it is that i'm in my twenties and thats a low risk anyway but i think even if i was in my late thirties i wouldnt get it done either. A baby is a baby and i would love it no matter what

Michelle x
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foxy

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Friday, September 15th 2006, 5:45pm

Thanks everyone for info, broke down in tears at work Tuesday, but afetr speaking to my midwife I felt better. I really wish I had not gone for this it's a nightmare and so upsetting, so not suprised this should be taken away altogether. I'm happy to leave it to the 20 week scan which would show if anything was wrong or glaring. The amnio. is a deffinate no I'm not taking the risk and my midwife has had a couple of ladies who have misscarried through it. I am now trying to forget about it all and continue as before.

Sarah xxxxxxxxxxxxxxxxxxx

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Monday, September 25th 2006, 11:40am

Hi Sarah,

How are you feeling about everything now?

Michelle x
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foxy

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Monday, September 25th 2006, 8:11pm

Hi Michelle,
I'm feeling ok, its weird sometimes I forget I'm pregnant and wonder if everything is ok. Still not really feeling anything apart from odd little waves at night, but not sure if its gas can't wait to actually feel baby.

I feel better about the Downs result now but apprehensive about the scan next Wednesday that baby is alive and well. I have been like this with every scan and get really nervous, I can't look at anyones faces but Craig's. Looking at his reaction to the screen seems to have brought me luck and having him there too. So glad this is next week do you feel like this too? Went and bought baby heart listening device to put on stomach today, but its too early to hear it all I got was mine which is racing, it's going really fast and especially so on an evening. I wondered if this was common at our 19 week stage? Hope all is extremely well with you.

Sarah xxxxxxxx

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Tuesday, September 26th 2006, 2:21pm

Everythings fine with me Sarah, just feeling really tired all the time. Wonder if that will ever pass?

I feel the same about the scan next week too. I think because i havent felt it move too i'm a bit paranoid that something is wrong with the baby. Also because i didnt get to see too much of the baby on my last scan cos my womb was still too tilted i think i'm paranoid that they've missed something.

But at the same time i'm still really excited.

Michelle x
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Tuesday, September 26th 2006, 2:40pm

Quoted

Originally posted by foxy
Went and bought baby heart listening device to put on stomach today, but its too early to hear it all I got was mine which is racing, it's going really fast and especially so on an evening.
Sarah xxxxxxxx


Are you sure its not babys heart..babys heart is very fast....140-150 bpm....




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Tuesday, September 26th 2006, 7:49pm

I had a risk factor of 1:43 at 18 years old, then had amnio. My son is very healthy so im afraid i personally dont hold much faith in serum or nuchal screening :(

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Tuesday, August 14th 2007, 5:39pm

High risk down syndrome

I just don't know where to start this, my head is spinning.

I had my down results today and I am high risk 1:135 so there is still 134 chance everything is ok - the MW who called me was really a matter of fact and kept on saying please call me if you have ANY question we are always here at the end of the phone which made me even more scared., although I know she was only trying to be reassuring.

Apparently the scan was fine 1:2555 it was my bloods that were high risk, she has offered me an amnio next week which I refused but she assures me the risk of MC is lower than 1% I just don't know what to do I am in complete shock.

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Tuesday, August 14th 2007, 5:48pm

Oh chuck :( The blood tests are so unreliable, I don't know why they offer them, I really don't!

If the scan was clear why did you have the blood tests? Are you classed as high risk for any reason?


Some light :rolleyes: reading for you here http://www.babycentre.co.uk/pregnancy/an…equestid=656696





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Tuesday, August 14th 2007, 5:51pm

hunny if you had the nuchal scan and the results were fine then i would go with that sweety...it is supposed to be much better than the blood test.

sorry i cant help more hun
sending you huge hugs :hugs:

love
k xxx



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Chilli

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Tuesday, August 14th 2007, 6:04pm

They will only do the scan if you have bloods. the weird thing was I forgot to take my blood forms with me, so when the sonographer asked for them i said I hadn't got them with me she really told me off :O so I had to persuade her to do the scan and I had to sign a form to say I would have my bloods taken within 24 hours, anyway DH went home and got them for me so I ended up having them done that day.

The sonographer even said everything is fine the fold is very thin, but according to the MW today my bloods were the issue, I am so confused Ihave a raging headache.

Can they see more at the 20 wk scan does anybody know?

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Tuesday, August 14th 2007, 6:06pm

How many weeks were you at the scan hun
10 IVF's 4 FET
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Tuesday, August 14th 2007, 6:15pm

:( hunny, 4 months ago my cousin had a scan at 20 weeks and they detected the baby had excess fluid on the back of its neck and around the head...her tripple test showed her to be low risk ....the sonographer said her baby either had downs or hydrocephlus (sp?) after an amneo she found out it was downs....but the tripple hadnt detected it. my m/w said the nuchal scan is a very reliable way to detect downs and she thinks we should all be offered it as standard and NOT the blood test as it is so unreliable.

i have been trying to find some of the threads of people who have been given worrying results too...andykirbster had high risk for one of his twins im sure, and so did a few others, i just cant find the threads....

wish i could do something to put your mind at ease hun...

:hugs:

k xxx



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Tuesday, August 14th 2007, 6:19pm

Spangle- I was 12wk 5 days at the scan.

thank you Willow I have been searching and the more I read the more i can see the scas are more reliable.

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Tuesday, August 14th 2007, 6:22pm

heres a thread that has lots of fzers results hun...

Need help with downs result



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Tuesday, August 14th 2007, 6:25pm

Chilli

The best advice i can offer is to speak to you midwife in the morning and ask to speak to a consultant about your results. They should be able to offer you a prompt appointment.

Big hug to you.



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Tuesday, August 14th 2007, 6:44pm

Oh Chilli... as Bells says, blood tests are unreliable. They are are 80-85% innacurate. The most accurate is the NT scan. The NT scan + triple bloods is broken down into 75% accuracy for NT scan and approx 15-20% for bloods. Both combined can yield a 90% accuracy detection rate. However, the scan is the best marker alone. I am 40 and my cons, after yesterdays scan told me I was low risk.

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Tuesday, August 14th 2007, 7:11pm

No advice I'm afraid just wanted to say I'm thinking of you and send you some :hugs:

x






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Tuesday, August 14th 2007, 7:12pm

I dont have much knowledge of this either Chilli but just had to say Im so sorry you have been hit with this - am thinking of you, dh and M. xxxxxx


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Tuesday, August 14th 2007, 7:14pm

chilli, when I had my son I was given a downs risk of 1: 43 which was super duper high, especially as I was 18 at the time. I went on to have an amnio which came back neg. He is a beautiful healthy little boy and to be honest I dont hold much faith in the screening tests

serum screening (blood tests) only give an accurate risk of around 68%, and even then its only a risk.

Easier said than done but try not to worry xx

This post has been edited 1 times, last edit by "londonchic" (Aug 14th 2007, 7:15pm)


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Tuesday, August 14th 2007, 7:19pm

I dont know anyting about this either hun but I too am sorry you have to deal with this.

I am sure everything will be fine though hun x


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Tuesday, August 14th 2007, 7:34pm

thank you everyone I am not going to have the amnio as we feel we are not high risk - the scan was fine and the bloods were not it's not enough for me to want to be certain, and regardless we would continue with the pg anyway so the only benefit would be that we knew either way, so we will mentally prepare ourselves but what will be will be.

Thank you again xx

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Tuesday, August 14th 2007, 7:37pm

sounds like a healthy way to proceed x







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Tuesday, August 14th 2007, 8:04pm

Hun I wanted to reply earlier when I saw this but the MIL was round.

The NF scan is far more reliable and if that was well within normal limits I am sure all will be fine. If it is playing on your mind still then you have until 16 weeks to request a repeat NF scan before deciding whether to have the amnio. My stepsister had to have amnios with both of her boys due to their dad suffering with Huntingdons and both went well.

I am sure that all is fine though, but bad on the midwife for worrying you when she knows that you have already had your scan. The NF is a far more indicative marker than blood samples anyway :(

xxx








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Tuesday, August 14th 2007, 8:04pm

Sorry you are having to worry hun. As everyone else says i'm sure there is nothing to worry about. xx
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Tuesday, August 14th 2007, 9:01pm

Huge cyber :hugs: to you hun!

blowkiss


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Tuesday, August 14th 2007, 9:18pm

Oh mate, Daft question, but what is your gut telling you?

Thinking of you.

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Tuesday, August 14th 2007, 9:20pm

That eveything will be ok x

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Tuesday, August 14th 2007, 9:24pm

Then believe it. I know that is easier typed than done, but that is all you can go on at the minute. Don't forget, Mother is always right. I would also tend to agree that the bloods are unreliable.

Re the amnio, I guess you have to weigh things up if you are really unsure. If Downs is not an issue for you, then don't have it. Sit down qith DH and really thrash it out between you.

We are all with you.

xx

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Tuesday, August 14th 2007, 9:33pm

Saz is right, follow your intuition Chilli.

If the scan had come back with a high percentage and the bloods had backed that up then you would be right to worry but essentially your scan came back perfectly clear and then a blood test that is renowned for being unreliable has come back to say that there MIGHT be a tiny percentage of possibility that you MAY have a baby with DS.


To be honest, if it was me I think I would initially feel the same kind of panic but looking at it from this side of the computer screen it seems like a very very small risk indeed.





Posts: 818

Reg: Oct 3rd 2005

Location: West of Scotland

Children: DS#1 (clomid) 1999 -vb - DS#2 (natural BFP) c-sec

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48

Tuesday, August 14th 2007, 10:04pm

Chilli - I totally agree with the rest of the girls - the scan is much more reliable than the bloods - sorry you are having to stress about this though. Would it put your mind at rest if you asked your consultant to scan you this time and have the fold checked again ??? might be worth asking if they can re-scan and take a closer look just to put your mind at ease??

Hugs xx

Elaine
DS#1 FEB 1999 (CLOMID)
DS#2 MAY 2006 - MIRACLE !!





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Reg: Oct 7th 2005

Location: x

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49

Wednesday, August 15th 2007, 5:31am

chili - my hospital only scan at 20 weeks because they believe the 12 week scan is too early one way or another. they only take bloods IF the 20 wk scan shows a potential problem.

if I were in your position, I would personally hold off from doing or feeling anything until a 20 week scan. IF that shows a potential problem, then take the blood test again. IF that shows a problem, then I would (knowing the risks) decide whether or not to take amnio testing.

big hugs

Chilli

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Reg: Oct 3rd 2005

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Wednesday, August 15th 2007, 5:43pm

Right clear head, good chat and all of your input including my MW we feel much more confident :))

I think the manner in which we were told; over the phone, in a matter of fact way, offering no real advise or reassurance it really it hit us hard. Not sure if I mentioned before but Mabel's results were 1:13000 or something so being told 1:135 seemed like really low odds in comparasion, I also found out yesterday that the bloods are not reliable (thank goodness for the site otherwise I would never of known that!) and thankfully I asked what result came up high risk- knowing it was the bloods we feel happy that all will be well.

But as these things can still happen we will also be prepared if we do have a DS child :))




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