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.

 

[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

 

[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

 

[DanielleM]

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...........

 

[debsbaby]

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.

 

[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. https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

I wish you the best.

 

[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.

 

[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.

 

[rai]

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

 

[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.

 

[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

 

[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

 

[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.

 

[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. let us know how it goes xx

 

[Rósa]

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

 

[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

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.

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

 

[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

 

[RileysMummy]

d/p

 

[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.

 

[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.