# High hcg-levels and Down Syndrome - Update



## bcwalti

So I had my genetic counceling and ultrasound today. Doctor said that despite my result from the triple test is a chance of down of 1 in 1067 (due to really good neck measurements and my age), the chance of down syndrome based on my hcg-levels alone is actually 5%. That's 1 in 20. Looking much worse now.... On the ultrasound everything looked perfect, but they did tell me that sometimes babies with down syndrome are born that looked perfectly fine on the ultrasound. The hospital also told me that their doctors do this invasive punctiation testing every day, and that their risk is 0.5% that something goes wrong. So basically (my interpretation here), I have a 10 times higher chance that I'll have a baby with down syndrome than that something will go wrong during the procedure.
I'm now trying to debate whether to do this invasive testing or not. Really everything (age, neck measurement, familiy history of genetic defects, ultrasound) looks perfect, except for the hcg-levels that are 7 times higher than normal levels. Also in a week I'm leaving for a 3 week business trip and I'm trying to debate if I did the invasive testing, should I do it before I leave (with the risk of something going wrong and missing the trip or having complications / misscarriage abroad), or once I return (i.e. in 4 weeks). I was leaning towards doing the test in 4 weeks, so that in case anything went wrong I would at least be home. On the other hand at that point I'll be at 19 weeks and should be able to feel the baby kicking and a possible abortion will be even harder to decide on....
I hope I'm not offending anyone here but my opinion is that if the invasive testing would show down syndrome then I would want to terminate the pregnancy. Right now this not knowing is killing me and I think if I decided agains the test then not knowing for another 6 months if my baby will have down syndrome will be really tough and it will just mean that for 6 months I will never trully be able to look forward to the birth of my baby because I will always have at the back of my mind that something might be wrong...
Right now I think I would want to call the hospital tomorrow and schedule the invasive testing for next week, but my opinion of what to do really changes by the hour. Any advice?

PS. Thank you for all the advice you have already given me so far.


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## RileysMummy

I think if you should do the test asap rather than wait. The longer you leave it, the more of a baby you're killing ikywim, baby will be more developed etc.
x


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## Pixxie

This thread will be closed because you have mentioned abortion.

I agree you should get a move on, although I dont agree with your choice. x


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## DanielleM

Pixxie said:


> This thread will be closed because you have mentioned abortion.
> 
> I agree you should get a move on, although I dont agree with your choice. x

Agree with Pixxie here abortion is not allowed to be dicussed as stated in the rules. Also I have a son with Cerebral Palsy so have very strong opinions so will listen to my mum when she says if you have nothing nice to say...........


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## debsbaby

RileysMummy said:


> I think if you should do the test asap rather than wait. The longer you leave it, the more of a baby you're killing ikywim, baby will be more developed etc.
> x

While the poster mentioned something that isn't allowed, they are, I believe new, and they are wrestling with a difficult choice. Comments like this are not helpful, and are designed to be inflammatory. "More of a baby"? what is that supposed to mean, really? 

None of us can really know what someone else is going through, even in the exact same situation since we do not know their total circumstances, and I think withholding judgement would be the more helpful thing to do.


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## Catters

I think you should test ASAP -- and although I, personally, am against termination, I refuse to judge you... I haven't walked in your shoes, per se.. I just think if it is of high concern, you should test as soon as possible so that all options can be considered. 

Remember, above all, that *NOTHING is guaranteed*. Absolutely nothing.. not until your baby is in your arms and even then, things can go terribly 'wrong', we just do the best we can do, with what we are given -- my feelings are that Downs is so far from the end of the world, but again.. that's my opinion. :kiss:https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html:kiss:

I wish you the best. :flower:


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## TattooedMama

My advice is to do the testing sooner rather than later. The 4 weeks will undoubtedly be difficult without knowing and put you under more stress. For your sanity I would say go ahead and do the testing sooner. Good Luck with making your decision, I hope the baby is perfectly healthy with no down syndrome!!! People will have many negative opinions about your deccision to terminate in the case of down syndrome, luckily that doesn't make it any less your decision and only you know what is right for you. :hugs:


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## mojobear

To answer your question, if it was me I would have the test asap, I don't think I could wait four weeks, I am sure your mind won't actually be on your job.

I really wish you all the best of luck and hope that you never have to make such a hard decision, but if you do, that you get all the support that you need to get you through such a difficult period that luckily most of us have never had the misfortune to deal with.


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## rai

I would test sooner since you would be stressed otherwise if you had to wait. Good luck with this difficult decision.


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## Hunnybear

Why would this be closed due to talk of termination as it's not a lifestyle choice she is speaking about but rather an ethical abortion of a wanted child that she is obviously struggling with.

My opinion is that you should do the testing ASAP because a terminationa at a later gestational age will present a lot more health problems. That being said, considering the high risk of miscarriage with the procedures, you should make sure that you would indeed terminate if you were to get a positive for Down's or other Trisomy defects. If you aren't sure, take a few days and think about it because if you are going to keep the baby anyway, why would you risk it? I have always said I'd end it if it came to it but I can't say for sure that is the case now that I'm pregnant - I would need to cross that bridge when I come to it.

I hope the best for you and your results and don't allow others' comments to judge what is best for you and your baby. But perhaps try talking to those in the ethical abortion threads.


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## fluffyblue

I would have the test hun and face the problem head on when you are 100% sure. Im awaiting my triple test results and based on them will have the amnio 

Hope everything works out for you - these choices are not easy so its not fair if anyone judges you, its your decision, your life and your baby xxxx


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## greeneyes27

I think some of the comments here are a little unfair. I had to have an amnio done at 19 weeks as a high risk test came back and I was so messed up about it all. It's silly to completely disregard the fact that you have options from the test results and when it's you going through the situation you very much have everything on your mind. The doctors talk through all these things with you when you go to see them but they don't provide the emotional support that you need. Yes it's a difficult topic and yes it may be against the rules, but people need to talk things through and understand how they feel about things. This may not be the purpose of this board but I can completely understand from my experience why you have feelings about it... plus these feelings change on a daily basis.

Going through the amnio was the most upsetting and frightening time I have had during this pregnancy and people deserve support, not judgements.

In reply to the post, I think you should have the procedure and wait until you get the results to even think about how you feel. My HCG was high and everything ended up being absolutely fine, this is also likely to be the case with you.

Sending hugs and if you need to chat you can PM me xxx


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## WannaB

I agree, have the test asap, an amnio will give you a 100% accurate result and then you can move on from there. I was quite worried about my results too, being 42 I knew that I was going in with high odds to begin with just because of my age. Nuchal scan and triple test came back at 1:974 for downs and in the 2000's and 7000's for the other two, my doc said 1:300 for a woman my age would be considered very low risk and no amnio would be offered so I was relieved when they came back even higher. I wish you all the best, I can totally empathise how hard the decisions are reguarding this, its not something that a Mother takes lightly by any means. :hugs:


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## Lucky.M

Have the test early. And I wish you all the best with it. I am sure it will be fine as your scan was good. Then face everything else if the time comes. Nobody should judge you. I had a scare with my 2nd and had to have an amnio but it was fine, but in that time I did think of my options, mainly because the fob was being horrible about it. It is not something you think of lightly. :hugs: let us know how it goes xx


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## RÃ³sa

Can I ask what you call high HCG levels? 
Also I would test sooner rather than later, so you can make a decision, I would hate for you to actually go through a birth then find out your baby has down's after what you said


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## RileysMummy

debsbaby said:


> RileysMummy said:
> 
> 
> I think if you should do the test asap rather than wait. The longer you leave it, the more of a baby you're killing ikywim, baby will be more developed etc.
> x
> 
> While the poster mentioned something that isn't allowed, they are, I believe new, and they are wrestling with a difficult choice. Comments like this are not helpful, and are designed to be inflammatory. "More of a baby"? what is that supposed to mean, really?
> 
> None of us can really know what someone else is going through, even in the exact same situation since we do not know their total circumstances, and I think withholding judgement would be the more helpful thing to do.Click to expand...

I didnt mean anything rude or nasty about it, i couldnt put into words what i wanted to say.. i genuinely didnt mean to be offensive or hurtful. What i meant however is the longer she leaves it the more baby will be developed


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## mummymadness

Good luck on what must be an awful time for you, I think the comments here personally were down right rude !!!, I have my opinion like Many but to voice them at a scared fragile woman is barbarick !!.

I would suggest canceling your trip hun and having the test earlier to help your peace of mind and help you decide yourself.

On a plus side i had a 1-100 chance of a downs baby with my daughter due to neck measurments we went through utter termoil cried many nights and personally decided against testing , We had many healthy growth scans after that and had a beautiful healthy 6lb little girl , I only wanted to share that as to let you know sometimes they are just sooooo wrong so try not over stress yourself too much yet .

Good luck xxxxxxxxxxx


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## RileysMummy

d/p


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## DanielleM

_While BabyandBump try to remain pro-choice on most subjects, out of respect for majority of our members that are either trying to conceive, or pregnant, we ask that you do not discuss topics on abortion and terminations outside of the 'Ethical Prenatal Losses' forum._

My comment was not rude I was just stating that abortion is not to be discussed in the pregnancy forums as stated in the rules of the forums.


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## Vix_2009

Poor girl comes on for advice and gets a back lash for mentioning something that she may not be aware of! 
She is going through a difficult enough time as it is!

And being through a very similiar situation I personally would say take the test as soon as you can, and perhaps delay the trip, if your thoughts about if they show problems are to go down that road.


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## lottie77

Hi :flower: It is a very hard decision that only you can make but you should deffo do it before another 4 weeks passes believe me you will think of nothing else 24 hours a day :hugs:, I went through the same torment 2 weeks ago I was given 1:28 chance of downs and im 33 yrs old on my 3rd pregnancy I even went for the amnio appointment but once in the room I couldn't go through with it so now I will have a 22 week wait to find out but I have accepted the outcome could go either way now and im good. 

I really hope all works out well for you and you get all the support that you need and remember only you know whats best for your life ahead :hugs::hugs:


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## bekki_d18

debsbaby said:


> RileysMummy said:
> 
> 
> I think if you should do the test asap rather than wait. The longer you leave it, the more of a baby you're killing ikywim, baby will be more developed etc.
> x
> 
> While the poster mentioned something that isn't allowed, they are, I believe new, and they are wrestling with a difficult choice. Comments like this are not helpful, and are designed to be inflammatory. "More of a baby"? what is that supposed to mean, really?
> 
> None of us can really know what someone else is going through, even in the exact same situation since we do not know their total circumstances, and I think withholding judgement would be the more helpful thing to do.Click to expand...


I completely agree, if you dont agree dont comment, because this lady is not taking the decision lightly but at the end of the day I respect her for being able to say this. I would say do it as soon as possible to make the procedure easier for yourself chick. Fingers crossed it wont come to that but you will just get more attached as it goes on over time. Hope it works out for you and ignore the comments above regarding whether your making the wrong or right decision because at the end of the day it is your decision. I felt I got slated for saying I would terminate if it was a high chance, considering the quality of life. Stay strong and hope it is okay. xxx


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## secretbaby

I am in a very similar position - 1 in 15 risk and it was all due to the blood levels not the neck messurements. 

I have decided against a amnio - as due to me having problems in my last pregnancy (my waters went very early and we lost my son shortly after birth) as for me it is extra risky messing with the fluid. After loosing my son I know there is no way I could termniate this baby (was offered that option several times with our last son and refused). 

I think that you do go into shock when you recieve these results and I do think they push you down the termination route (well from my experience - of this pregnancy and my last one). I would hate you to rush into anything you regret later - this is not a judgement I just feel that there is so much pressure put on you at this time its hard to think straight when you are shocked and worried. It may be best not to go on the trip but to take time to look at the situation from all sides.

I found the downs syndrome association web site very helpful- and had a lot of support from a lovely lady on here who has a child with downs syndrome. I now feel at peace with my decision not to test but it is a VERY personal choice and I can totally understand why people do have the amnio.


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## jojo-m

Just wanted to offer hugs and support with whatever you decide. I agree with others about testing sooner rather than later as the worry is no good for you or baby. Then you can go about making what will be the hardest decision of your life and for that you need support not judgement! There are many of us on here that feel that way so as others have said if you would like to pm me anytime I will listen. Good luck hun hope its all a worry over nothing and your baby is healthy! xx


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## Marlarky

My mother told me that if I would terminate a baby if they had down syndrome's, then to get it. If I would keep the baby no matter what, then don't get the test. I suppose it also affects how long you hve been waiting to conceive this baby. Some people waited for years and would do nothing to even risk miscarriage at all.

My doctor described it in a way of "Who are you?" He said that if you are the type who needs to know everything, then you might want to do it. Some people prefer not to know, so they probably won't get the test.

I also believe that it has a lot to do with the baby. If you can afford to raise a baby with Down's Syndrome, and if you can afford all the medicine, possible surgeries, that go along with it, etc.

In the end, it is all about you and your choices for you and your baby.

If you want the test, get it asap. The results are better and I believe the miscarriage rate is a tid bit lower if you get it done at the earliest week rather than the latest week.


Good luck and best wishes :hugs:


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## PersimmonChic

Hi, bcwalti! Just wondering if you went ahead with the amnio. I'm currently on my 20th week and due to high HcG level, I was advised that my baby has a 1:15 chance of having DS. My appointment for another level 2 ultrasound is in 2 days; and husband and I have not fully decided yet if we even want to definitively find out the possibility. 

This is the first grandchild for both sides of the family and everyone (not just hubby & myself) is excited for the baby's arrival. We are definitely in a dilemma whether to start discussing options or to just enjoy the next few months of the pregnancy.


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## tabitha561

I'm really annoyed by this post. I don't think you should abort a baby just because it has downs or anything wrong with it. There are so many people out there that can't have kids that would love to have a child no matter what condition they have. I think that it is really selfish of you to even mention abortion at all all! I'm not gonna get a test at all, I will love my baby no matter what. I think you should have thought about that before you got pregnant there is always a chance of anything going wrong.


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## Evian260

Test as soon as you can and do not let any of the negative comments here get you down. I'll be thinking of you at this difficult time...


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## Evian260

Can we please stop knocking her down? She didn't come here to be belittled.


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## KandyKinz

I agree that due to the OP's intentions regarding what she would do with a positive amnio it may be best that this thread be moved to ethical loses..... If she waited till 19 weeks for the amnio, it could take nearly two weeks for the results depending on whether they are equiped for FISH or not and if it came back positive then it means she could be facing a termination at 21 weeks.... a point in which baby is fully formed and could even possibly survive outside the womb with assistance...... It just gets controversial and so she'd be prolly be best off discussing the matter elsewhere where she would get the support she needs....


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## S_a_m_m_y

I know how difficult this is to find out especially being all hormonal from being pregnant. Its a very difficult decision to make. I had to make a very similar decision about my pregnancy, not because of Downs but because of a chromosome issue, being told that my child had a 50/50 chance of either miscarrying at any point in the pregnancy or being born with physical deformities. I never got pregnant to think I would be put in this position ever. Here in the US I had to wait until I was past 17 weeks to even get my amnio done just to find out if the chromosome where correct, then wait up to two weeks to get the results back. Long story short everything turned out just fine and I have a healthy little boy. If you cant cant handle having a child with Downs then you should get the testing done right away(I dont think its right to terminate). But remember there isnt a test that is 100% accurate, and this is your choice, whats best for you and your other half. I wish everything goes well for you and that your baby is everything you hope for. I'll be praying for you. :hugs:


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## S_a_m_m_y

For everyone that is taking this personal or doenst like this thread...you dont have to read it, you dont have to comment. This isnt a loss..... she is still pregnant and I am sure she wants to stay pregnant. Talking about This Thread should be in--->Ethical Prenatal Losses' when did she lose the baby??? She doesnt even have answers yet! And how many people do you think are requesting to be in Ethical Prenatal Losses' how many replies is she going to get? She's just looking for advice and support. If you dont want to support her, then leave the thread.


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## JaniceT

Hi dearest,

Many hugs to you. I hope that you're getting much support from your OH, family members and friends.

Took us years to get pregnant and doubt we'd be able to have another child after this. We decided to take the DS test and other blood tests because
It is so important to us that our child is fully equipt to face the challenges of life when we are no longer around in being. We have niece who is a special needs child who is dispraxic, mildly autistic, had ADHD and a host of other mental difficulties. She feels alienated and sad when she was asked to leave from more than 30 pre-schools/nurseries and kindergarten in the past 3 years. Yes, 30 She has just been asked to leave her primary school too. She sometimes wonders why and asks her mother, with her limited vocabulary. It nit only hurts family members but we can see it hurts her too. She deserves so so so much more.

So I so understand where you're coming from because you really want the best for your little one. I hope you find guidance in your prayers and support in your family.


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## jenfen

This thread was started ages ago... the lady who posted will have already made her decision by now so there's no point in posting! (I hope everythihg worked out for you!)

J x


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## S_a_m_m_y

Thanks for pointing this out! I guess I dont read the dates the theads are started, usually read whatever pops up on the first page and relpy etc.... I hope everything turned out for the best for OP.


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## LoraLoo

tabitha561 said:


> I'm really annoyed by this post. I don't think you should abort a baby just because it has downs or anything wrong with it. There are so many people out there that can't have kids that would love to have a child no matter what condition they have. I think that it is really selfish of you to even mention abortion at all all! I'm not gonna get a test at all, I will love my baby no matter what. I think you should have thought about that before you got pregnant there is always a chance of anything going wrong.


There are people who have had to terminate their much loved babies, that they WANTED and LOVED. In fact, I know many Mums who have terminated their baby's for medical reason's, who's babies would have been born suffering, whose babies would have died in pain, maybe minutes or hours after birth. Those Mum's are not selfish. They are the most selfless people I know, they have chosen a lifetime of the worst pain you could ever imagine, a lifetime of loss and grief, to spare their child that pain. So unless you have been in that position, and I hope to God you never are you have no right to judge what so ever.

I hope the OP made the right choice for her depending on the results (hopefully positive) and is getting lots of support what ever happened.


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## bellablue

alot of the times those test can be wrong and baby's are born 100% healthy thats why alot of women do not go threw with testing! i hope everything worked out for you hun god bless :)


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## yumyum1979

big hugs with what you are going through xx


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## yumyum1979

I wish people would stop and try to support this poor girl x


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