Did anyone have a HIGH risk downs (1:10), do amnio and everything was o.k.?

[lildrgn]

Hi there,

I am 35 and I have been told from my bloodwork that I have a 1:17 chance of having a downs baby, and 1:97 of having a Trisomy 18 baby. I'm planning on having the amnio in 3 weeks. I was wondering if people who had similar risks ratios and opted for amnio found that everything was o.k.

I'm cursed with having the black and white personality so the "unknown" or grey areas always are hard for me to take.

Thanks!!!

 

[mafiamom]

hi hun! sorry you are having to deal with this worry. i was one of those who had a 1:3 risk of trisomy 18. i was devastated. i had an amnio and everything is FINE

have you had a scan? why are they making you wait 3 weeks for an amnio? you can get one of those at any point in your pregnancy. 3 weeks seems cruel to me.

i had a scan and showed one marker for T18. but according to the T18 website one marker is basically no marker. but my blood work was bad so i went ahead and did the amnio anyway.

hugs. i would REALLY try to get in earlier. 3 weeks is insane!

 

[mafiamom]

ps i am 40 in 2 weeks. i think the age screws with the blood results, personally.

 

[Sovereign]

I've got a friend who had a high risk of a downs baby like you and she had the amino and everything was A-okay!!! Hope it all goes well for you x

 

[chippysgirl23]

i hope everything turns out well for you, sorry i dont have advice

 

[lildrgn]

Hi everyone,

That makes me feel better. My baby was so tightly curled up when I went in for the screening the doctor couldn't get a good measurement on the baby so we are unsure how far along I am. I was told we can't do amnios until I'm 16 weeks . It really does suck playing the waiting game.

We missed our chance to do the cvs rest due to not being able to tell the age of the baby, and also due to the location of my placenta. I keep telling myself that I don't have 1:17 chances of having a downs baby, I have a 16:17 chance of having a "normal" baby.

I would be ok even if we did have a downs baby, scared but ok. My husband is really worried though.

Thank you again everyone!

 

[mafiamom]

wow. i was told you can get an amnio as long as you have free fluid to collect. i was offered one at 12 weeks. look into that one. are you from the uk? is it different there?

 

[lildrgn]

I'm in Nevada. I have had increased bleeding since week four so maybe that's why they had me wait It would be nice to have it now but the word it no I guess

 

[Maybump2]

Hya,

CVS is never offered before 11wks as some studies have shown that at this stage it can sometimes cause problems with fingers and toes forming and Some studies have shown that when amniocentesis is performed before 16 weeks there is a small risk of the baby developing club feet. After this time the risk goes away.

I have heard of some people having bad blood results that have also experienced bleeding during early preg - there seems to be a possible link (don't want to throw hope in just for the sake of it but it might be linked? fingers crossed) I think you are looking at it the right way 16:17 chances is pretty good odds of a good outcome and your computer generated figures will be taking into account your age which automatically makes the odds worse regardless of if the risk is any higher with your own baby.

Did they see any other soft markers on the scan - missing nasal bone, short femurs etc?

Check out https://www.fetalmedicine.com/fmc/chorion/02-amniocentesis/ the Dr who developed the Nuchal test runs it...

Hope you can keep sane for the next 3 weeks, try to focus on the fact that the nuchal test is not a diagnostic test just a guess at which box to drop you in and once you have the amnio it will give you all the facts - 16:17 is the figure to hold on to xx

 

[lildrgn]

They did say they couldn't see a nasal bone. I was 12 weeks at the time of the ultrasound.

 

[lildrgn]

Sorry ladies for the short replies Hard to type long messages on the iphone without going cross-eyed I have had a lot of issues this pregnancy so I'm honestly not surprised that I would have this one as well. Here's the complete story. I have a daughter from a previous marriage who is 9. My husband and I just got married in October of last year. He is 38, I am 35. Both of us are very healthy people, he is a professional cyclist. We had accepted the fact that we wouldn't have any children (he doesn't have any of his own). Shortly after we got married we found out he cad cancer in December. He had it removed sucessfully and did not require any radiation or chemo. One week after the surgery was done, we found out I was pregnant. SURPRISE!!

At 5 weeks I started bleeding. They could not figure out where it was coming from and in the end decided that it was just left over blood in the uterous. I finally stopped bleed about 2 weeks ago, however anytime I sneeze, cough, or lift anything I bleed for about a half hour. This was the first sign my doctor was concerned. When we went in for our perinatal screening the Doctor's concerns were that he couldn't see a stomach ball, nasal bone, the baby's head was large compaired to body, and the baby seemed much smaller than it should be at the 12 week mark. I'm truly hoping that the baby was so tightly curled up that the doctor wasn't gerting a good scan.

I wanted to give you ladies a little more information that might help explain my situation.

Thank you so much for all the kind words and information ladies!

Hugs

 

[lildrgn]

Oh! One last thing, I have only lost weight this pregnancy. I just gained enough weight back to be at my pre-pregnancy weight. I had lost 7 lbs. I haven't been sick, I eat every hour, so I didn't lose the weight from that.

 

[jade30981]

Hi. I had to jump in here and say my sister at 40 had a baby with the test that said she had a high chance of a baby with dissabilities. She chose not to have amnio because she would not abort. The baby is now fine and has NO issues it was a false positive. The same sister had a daughter who at 20 had the blood work and ultra sound done both had issues. the measurement of the neck said there was a problem. Again a fine healthy boy born no problems.. this is not and exact science. The baby may be just fine.

 

[inperfected]

Hugs!!

I haven't be through this, but can only imagine how scary it would be. I just wanted to say something about the post re your weight...

I had been "slightly" nausous throughout my pregnancy so far (15+4 now), but I am still 4lb lighter than when I got pregnant, and at worst was 7lb lighter, so it can be just be a normal part of pregnancy too

 

[elfin2011]

I had a risk of 1:15 at age 35, with this pregnancy. Mostly due to the blood work, but the nuchal fold measurement wasn't great either. I had a CVS rather than an amnio, and got the all clear. I'm now 35 weeks pregnant and all appears to be fine.

Claire x

 

[nullaby]

My mom had me at 44 with a very high ratio of downs, and amnio came back fine. Hope your amnio goes well xx

 

[Marleysgirl]

I had a very high DS risk, 1 in 5, but chose not to have an amnio - Andrew was very premature and has other issues, but he doesn't have DS.

I just wanted to say to the OP that we took a very similar positive attitude to the scoring - we saw it as a 4/5 chance of Andrew being fine, rather than a 1/5 chance of not.

Interesting about the age thing, I know that we're higher risk when we're older (I was 40 when Andrew was born) but does our age actually screw up the blood test?

 

[Maybump2]

Age doesn't screw up the blood tests but as you get older the genetic information in eggs and sperm isn't as good and so there is a slightly higher risk of problems - this is factored in when giving you the computer generated risk along with other things like blood work and nuchal fold, soft markers etc... interestingly the age group to which most babies with downs is born is actually 25-30 (but this could be due to the higher number of babies born in this bracket compared with 30+)

When have you got your amnio booked for?

xxx

 

[lildrgn]

My amnio isn't until April 8th tomorrow I go in for a follow up ultrasound after the blood results. I'm a wreck!!! I've started having nightmares.

 

[Maybump2]

Aww hun, i'm sending you hugs xxx Maybe they can have a good look tomorrow and put your mind at rest a little or at least discuss things a bit more to answer your questions x

I know nothing anybody says will remove the worry you are going through or uncertainty but i know everybody is probably thinking the same as me and is hoping for a good outcome for you.

My nuchal in this preg was 3.6mm and that gave me a 1:97 chance but my bloods brought it up to 1:550 so i wasn't offered and amnio as the cut off point is 250... i have spent the majority of this preg with the thoughts in the back of my mind but i just won't know until i deliver (although i'm aware that people with higher stats would probably swap with me it's difficult not being able to find out if you are the 1 in 550 which at least you will be able to)

I have had several other issues like urine infections, a subchorionic hematoma with bleeding etc and a stupid Dr telling me my cervix was dialiating and only 1cm (it wasn't) to take my mind off things though...

I really hope you manage to control the worry, easier said than done but hold on to those figures 16:17 until you hear different xxx