Downs Tests - can't decide

[zofranks]

So my first scan is 12th Dec, we are booked for the Nuchal scan but we haven't actually decided whether or not we should have it done. I am 40 & a bit worried that they will automatically just register me as high risk, when do they do the DS blood test - is that after the scan, my next appt with the mw won't be until I am 16 weeks or more.

Part of me wants to be reassured but part of me is worrying that they will just say I am high risk & we have to spend the next 6 months worrying.

What happened with those that have had the tests?

Thanks

 

[babytoes]

HI... I'm 35, 36 in a couple of weeks. I'm now 18 weeks. Had my 12 week scan in November, where they took measurements and then I was sent straight for blood tests which is normal at my hospital. I was told that if I was high risk I'd hear back within 2-3 days. I finally heard back more than 2 weeks later and was told that I am low risk with a result of 1:9100.
Good luck

By the way... 12th Dec is my birthday and also the date of my 20 week scan! x

 

[Sunshine12]

Im getting my first scan (12 week) on Thursday. Its the NT scan and they do the bloods at the same time. x

 

[kosh]

So my first scan is 12th Dec, we are booked for the Nuchal scan but we haven't actually decided whether or not we should have it done. I am 40 & a bit worried that they will automatically just register me as high risk, when do they do the DS blood test - is that after the scan, my next appt with the mw won't be until I am 16 weeks or more.

Part of me wants to be reassured but part of me is worrying that they will just say I am high risk & we have to spend the next 6 months worrying.

What happened with those that have had the tests?

Thanks

you will not be high risk just because of your age.

 

[Gia7777]

I am 40 and pregnant with my first. I opted for the NT screen and my age alone put me at around 1 in one hundred something or other for downs and AFTER I had the NT screen my results were like 1 in two thousand something or other (I can't specifically recall off the top of my head). I think since the NT is non-invasive I say go for it - when all was said and done my OB told me I had a 10x more chance of having a miscarriage from an amnio than I would having a Downs baby. You have to do what's best for you and your situation and peace of mind.

There is SO much emphasis put on the risks for Downs for us older moms that I think a lot of it is just plain alarmist. I was reading on the March of Dimes website just the other day that 1 in eery 160 births result in stillborns but we don't hear half as much of that is we do the downs screening and such.

 

[Borboleta]

When I did the test it came back 1-94 chances for ds baby. I did the amnio and baby is fine. I am against the blood test from now on. I would do the scan first and see how it goes and them if you are still worried see how you feel about doing the amnio. If I decide to have another baby I will go right for the amnio and definitely skip the blood test.

 

[PoodleMommy]

When I did the test it came back 1-94 chances for ds baby. I did the amnio and baby is fine. I am against the blood test from now on. I would do the scan first and see how it goes and them if you are still worried see how you feel about doing the amnio. If I decide to have another baby I will go right for the amnio and definitely skip the blood test.

Same here. I am 40 and expecting our first, and I had both the NT scan and bloodwork. NT scan was perfect; but one of my blood levels gave me an overall risk of 1:88 for Downs. Next pregnancy, I will do the NT scan again but not the bloodwork. My high-risk OB said that nuchal thickness + presence of a nose bone at 12 weeks is a far better predictor of Downs than bloodwork, especially over 35. Oh, and I'm not doing amnio!

 

[SabrinaKat]

Hi,

I just turned 44, so was 43 when I conceived -- we did the NT/bloods at 12wks and my risk went from 1/27 age/downs to 1/162 and 1/40 age/other to 1/955 and decided not to do cvs; at 16wk scan, everything seemed fine and we discussed risk of amnio; our ob/gyn who is fetal medicine specialist (we're private in Ireland) agreed that IF anything appeared worrying then we would proceed to amnio, but given the risk of mc, I would have been devastated to lose a healthy baby; at 20wk and 24wk scan, our risk for downs went to 1/300+ and he has a very healthy heart (70% of downs have problems) and other soft markers are clear. Obviously that is not definitive, but I trust my ob/gyn and her expertise...I have heard that the NT and bloods have a 90% reliability rate, but there are of course false positives and false negatives. Ultimately, YOU have to decide whether to do the amnio, but don't let anybody bully you!

I also asked about the high risk categorisation and she said that a first pregnancy is always high-risk, but it has nothing to do with age...so I am 'high-risk', but so far, my pregnancy has been normal, routine, etc.

best wishes

 

[Torontogal]

I think more information is always better when there is an opportunity to get this info in a risk-free way. I am 36, will be 37 at delivery. I had the NT and bloodwork and my risk came in at 1:1,150 so we decided against amnio at that time.

If this test had shown our risk to be high we would have done the amnio. The amnio is invasive and not without its risks, so IMO any information that can help you decide whether or not to do it is worthwhile. Of course, this is predicated on the assumption that you would consider amnio at all and take action if the amnio were to turn out positive. If you wouldn't take action on the results maybe there is not point taking the screening test. It's up to you and your baby's father to decide what action you would take if you did have a Downs baby and work backward from there.

As Sabrinakat said, if you don't go for amnio after the first scan, there is still an opportunity to look for soft markers at your next ultrasound. I am going in for another one at 19 weeks and they told me they will check for soft markers then. This will reassure me if there are none, and give me the opportunity to get an amnio after all if there are any soft markers at that time.

Good luck whatever you do and all the best

 

[future_numan]

I am 39 and I choose to do no tsting other than the 20 week U/S.
I did it with my last pregnancy and the stress and fear was hard on me.
It is a personal choice and only be one decided between you and your baby's father

 

[christyscott]

i was 34, a month from 35, when i conceived. the nuchal came back at 3.9 and my labs were slightly off- cvs confirmed downs. these tests being recommended for those 35 and above are not alarmist- it is very well established that women over this age are at a higher risk of having a downs pregnancy as compared to a female who is in her 20's.

i am 35, will be 36 in a week, and am almost 34 weeks pregnant with what appears to be a healthy girl. i did the nuchal again, and it was normal as were the labs. my calculated risk which included my age, and the fact that i am automatically much higher risk than an equivalent female my age secondary to having had an abnormal pregnancy, was something in the park of 1:2000. i did not elect for invasive testing. i did not feel that the risk of miscarriage was acceptable given my odds. i did undergo a 20 week anatomy scan though to help evaluate my risk further.

 

[wellyboot]

I'm 37, and have just had my scan results back today. They did a nuchal scan, and told me that the measurement was 2.7 mm, and that anything over 3.5 mm would be classed as abnormal. They also took bloods so that they could combine the bloods and the nuchal scan result to give me an overall statistic (they told me that you can have no problems with the nuchal scan but come back high risk from your bloods, and vice versa).

My form came back that my background risk (due to my age etc. I assume) is 1:212, and my adjusted risk (taking scan and bloods into account) is 1:1160.

I agree with what a previous poster said; start with what you would do if the baby did have downs, and work backwards. This is what we've done when coming up to tests, and we've found that it's helped us to make a decision about whether to go for the scan or not.

Good luck with the decision you make.

Welly xx

 

[Minivan]

Hi,

I am 35, and these will be babies #3 and 4 for us. My dr. told me that because of the fact that I have twins I will most likley be at risk. So we decided that it didn't matter what the tests said anyway, so we decided to go with no testing. For us it was the right choice. I haven't had to stress about it at all. Like others have said in this forum, you have to make the choice that is right for you.

One of the reasons I had done the testing before is that I wanted to see the baby. But I was still able to go for an u/s at the 12week mark for growth and viability. That made me happy.

good luck with your choice!

 

[April2012]

I will be 35 upon delivery with my first baby.

I had an NT scan and blood work done at 12 weeks:

Down syndrome:
Risk based on age alone: 1 in 290
Risk after blood/scan: 1 in 5781

Trisomy 13 & 18
Risk based on age alone 1 in 524
Risk after blood scan: 1 in 10,000

I had an amnio done at 16 weeks. all my results from my amnio are good.

women question why I would risk having an amnio when my risk assessment is so low. For me, I read of enough situations where the risk assessments were not accurate--either false positives or false negatives. Furthermore, my OH and I are of the mindset of considering termination in certain situations.

what would i do next time? I would schedule my NT scan and blood work for as early as possible (10 or 11 weeks). If my results came back high risk (for me that would mean one in 500), i would schedule a CVS immediately (around 12 weeks). That way, if termination became an issue, I would still be in my first trimester. If my results came back very low risk from my NT scan and blood work, I would do an amnio at 16 weeks again.

 

[Septie]

I did a nuchal scan plus cvs in both pregnancies. Regardless of preferences, I would always do a nuchal scan, as that can indicate heart problems (which are more common in Downs kids, but also occur otherwise) - and knowing that can be helpful to schedule detailed heart scans during the pregnancy/post birth treatment.
A friend of a friend, 38, just had a baby w/ Downs that required immediate heart surgery after birth. Nothing suspicious prior to labor. She didn't do invasive testing.

 

[Eleonora]

I hope it is clear from all these experiences posted so far that they ALWAYS give you a statistical answer (like 1:352, not just saying high risk) and they should also tell you the results of the nuchal measurement and blood tests that the risk analysis is based on. If you are lucky they factor in the nasal bone too. Since you know your age by itself makes you high risk for Down's syndrome, it is quite likely that your results will actually decrease your existing high risk yielding a final answer of a moderate or low risk which may be so reassuring (though still just statistical) that you won't even have to weigh the option of invasive testing. It is also great fun to see the fetus at that age jumping around. Reasons not to do it might include if you are sure no matter what you want to carry the pregnancy to term and feel no need to prepare in advance for the eventuality that your child might need extra care, or conversely, there could be people who are fed up with the statistical uncertainties and know they want amniocentesis or cvs.

 

[Jtiki]

I'm 39 and my results came back as 1:1100. I chose not to have the amnio and I stressed about that for a few weeks. Today was my 19 week scan and there were no soft markers indicating problems so I am relived and no longer worried about downs.

 

[Sunshine12]

Can someone tell me what a soft marker is please as I have no clue but keen to know as my results havent arrived yet and I will consider amnio if necessary. Thanks

 

[sadie]

Hi ladies.

Interesting discussion. i'd like to know more about soft markers, too!

Today, my doctor told me that since I am 42 (a high risk age, no matter what), the numbers from my NT wont mean too much whether they're good or bad and suggested that I go straight for an amnio in 4 weeks time.

I am worried about doing an amnio....

and am feeling a bit frustrated!

 

[April2012]

Can someone tell me what a soft marker is please as I have no clue but keen to know as my results havent arrived yet and I will consider amnio if necessary. Thanks

soft markers as i understand are visible signs (for lack of a better word) on the ultrasound. the NT measurement is one. the nasal bone is another. femur length is another. soft markers are only tools for assessment of risk...not diagnostic in nature. the only way to know for sure is to have a cvs, an amnio or wait until birth.