Anyone Been HighRisk For Downs But Refused Amnio??

[Jelly_Tot]

i was sent for my quad test at 15 weeksconfirmed gestational age by ultrasound. at the lab the tech used my LMP date which I advised her not to use cause it would put me at 21.6 weeks when was actually 15. i have very irregular periods due to polycystic ovaries anyway the test came back positive for downs. My doc is being an ass about it. I was told that it came back positive because of the wrong gestational age. i did 2 anomally scans at 20weeks by different specialist but they both came back normal. What do you ladies think? i live in the caribbean and we donot have expertise like the states, united kingdom or Canada. ladies please let me know what you all think. thanksI am so worried I am now 33 weeks

Like you said its prob because of them using the LMP date instead of gestational date they never listen to mums always think we dont know anything at all xx

 

[overcomer79]

I was criticized when I had my first tri screening about off hand refusing having an amnio done. I really don't mean to scare anyone, but I lost a cousin because the person doing the amnio was not paying attention and stuck the needle in his lung .

The people asked me and kept questioning me aobut it and I said absolutely NOT!!!!! The only reason I wanted the first tri screening is because it was non invasive and could tell me how to mentally prepare for possibilities. That is perfectly OK.

Later, I got criticized by my MIL about not having it done to determine if James inherited Albinism or not. With the comment "I just want James to be able to see". OMG!!!!!!!!!!!!!!!!! I went off on her!!!! I can "see"...just can't drive a car...BIG LOSE!!! I have a master's in chemistry so I don't have ANYTHING to prove. I also told her that it wasn't worth losing the life of my baby boy due to stupid insecurities.

I am now sitting here watching my six week old health beautiful baby boy playing on his stomach. And 1:210 chance is only like .5 percent chance that he will have DS so that is 99.5 that he won't!!! Good luck and hugs...I'm not going to tell you not to worry because I know that is IMPOSSIBLE!!!! I am sure you will be the best mother with the baby that you get .

 

[Szaffi]

Blackthickpea, I also think that the test was seriously flawed if they used the LMP, as the hormon level changes every week, so it is essential that they get the week right. I think my first test result was also due to the fact that the doctor told me to go on the absolutely earliest day possible. It is impossible not to worry, but try not to let this ruin your pregnancy. I have worried so much about it, and it made bonding with my LO near impossbile.

 

[Jelly_Tot]

I was criticized when I had my first tri screening about off hand refusing having an amnio done. I really don't mean to scare anyone, but I lost a cousin because the person doing the amnio was not paying attention and stuck the needle in his lung .

The people asked me and kept questioning me aobut it and I said absolutely NOT!!!!! The only reason I wanted the first tri screening is because it was non invasive and could tell me how to mentally prepare for possibilities. That is perfectly OK.

Later, I got criticized by my MIL about not having it done to determine if James inherited Albinism or not. With the comment "I just want James to be able to see". OMG!!!!!!!!!!!!!!!!! I went off on her!!!! I can "see"...just can't drive a car...BIG LOSE!!! I have a master's in chemistry so I don't have ANYTHING to prove. I also told her that it wasn't worth losing the life of my baby boy due to stupid insecurities.

I am now sitting here watching my six week old health beautiful baby boy playing on his stomach. And 1:210 chance is only like .5 percent chance that he will have DS so that is 99.5 that he won't!!! Good luck and hugs...I'm not going to tell you not to worry because I know that is IMPOSSIBLE!!!! I am sure you will be the best mother with the baby that you get .

Yeah thats why i didnt want the amnio cause you have the regular 1% chance of miscariage but as you have stated, other things can go horribly wrong too and it was just not worth the risk for me because no matter the results i wouldnt terminate anyway.

I cant believe your MIL is so nasty! (although mines is like that too lol)
What would it have mattered if he did inherit it? knowing wouldnt change it or make him not have it

And not everyone wants to drive anyway! i dont ever want to drive i dont see how that is a big thing in life anyway, god did give us legs (and bus's/trains/taxi's/cabs lol

 

[blackthickpea]

szaffi ty but i worry all the time did yr test come back positive for dsydrome

 

[Szaffi]

My first bloodtest was screen-positive (1: 159) chance at 14+6 wks (though it was treated as a 15 wks test), my second bloodtest was 1:418, so screen negative at 17 wks. I did two detailed scans at 17 wks and at 22 wks, all came back clear, with no soft markers or any visible abnormalities. Also the nucheal translusency test at wk 10+4 was normal.

Based on all of this, we refused the amnio. But of course, I won't know it for sure until I deliver the baby. After lots of crying, OH and I decided that if we'll get a baby with DS, we'll do our best, just as we would if our baby had any other type of abnormality, for which there are no tests (autism, cerebral palsy, etc...).

 

[Arielle]

if everything is fine in the ultrasound.. I wouldnt do it... If they did find out the baby had Downs, its not like they can cure it. And the chances would have to be a little higher for me, more like 1 out 5, backed up by a nuchal fold defect. I personally wouldnt chance it.

 

[RubyRainbows]

Hi! I went thru the exact same thing when i was pregnant with my son, Jayden. I had the quad screen and it came back that he was at-risk for Down Syndrome... they said he had a 1:17 chance of having it! However, the test often has false positives for whatever reason. So... i had to have level 2 ultrasounds done by a specialist bc i also refused the amnio. The amnio is the only way to know for sure if your baby has DS... the u/s only looks for markers of DS but even if a child has markers, he may not really have it... and even if he has no markers, he may still have it. I wasn't willing to risk having the amnio though bc i was worried of it causing a miscarriage. I was heartbroken & devastated at the thought that my baby may have DS but i loved him and wanted him safely in my arms, regardless, so i did not want to risk a miscarriage. I figured no matter what, i would know for sure at birth! There were no DS markers in any of my ultrasounds... they look at the face, the bridge of the nose, heart, femur bones, shorter limbs, low birth weight, and low muscle tone. The specialist who did my ultrasounds explained every single thing to me as she was checking the baby during the u/s's. She walked me thru her whole exam of the baby so i knew exactly what was going on. Definately don't hesitate to ask questions while they are performing the u/s and call your doctor afterwards to discuss the results. They should be keeping you informed of everything they find and don't find! When my son was born he was beautiful & perfect in every way. He does not have Down Syndrome. I spent my whole pregnancy worried and stressed out for nothing! I wish i had just enjoyed being pregnant, bc no matter what i would have loved my son with all my heart! Anyhow - my advice to you is to enjoy your bump, and your little bean... and pray for the best! If you have any other questions, lemme know! Good luck with everything!

 

[WannaB]

With my second child I was offered an amnio, refused one, because of my age, if you can believe it, I was only 30 at the time! How things have changed. Im 41 now and ttc number three after an 11 year gap. Ive been told by the doctor that I will only be referred to a genetic specialist if the indicators point towards DS. I have to admit the thought of DS has weighed heavily on my mind in ttc number 3, but reading these posts has put my mind at ease, well a little at least! Im classed as a 1 in 95 chance on having one based soley on my age at this time, but am liking the odds more, when put into percentages the odds are on my side! Im still unsure as to whether or not I will take an amnio if it is needed, but at least I know there will be the lovley ladies on bnb to talk through it with me.

 

[blackthickpea]

well ty to all the ladies who have answered but i must confess that I am so worried and as the time is drawing closer i am even more worried i pray all the time but i worry tons regardless. as is now I am even scared to go in labour, However i am so thanksful for this site cause i am reassured by most of the women on here i still wish that other women who have gotten positive results for ds but emeded up having healrhyt children should share their experience

 

[RubyRainbows]

well ty to all the ladies who have answered but i must confess that I am so worried and as the time is drawing closer i am even more worried i pray all the time but i worry tons regardless. as is now I am even scared to go in labour, However i am so thanksful for this site cause i am reassured by most of the women on here i still wish that other women who have gotten positive results for ds but emeded up having healrhyt children should share their experience

Try not to worry too much, worry & stress are not good for the baby! Keep praying and thinking positively! I think it sounds very reassuring that the doc feels your positive screen is the result of the wrong gestational calculation. From what the other girls wrote, it sounds like that could def effect the test. I think alot of factors must effect it since there is such a high amount of false positives!! I worried NON-STOP during my pregnancy... and i really, truly wish i had just relaxed & enjoyed it more! I know it's easier said than done! Good luck & please keep us posted on how everything is going!

 

[sw2129]

I didnt have the blood test but on my 20 week scan they found some signs of DS, we refused amnio test because of the risk of MC. We were told we had 1-100 chance he may have it but that dont bother us we have great support around us and will love him just the same. TBH i havent even giving it a second thought, i thought i would be down all the time but have coped really well!! Hope that you will be ok xxxx

 

[cleopatra]

Hi hun, I was in the same situation with 1:214 and decided not to do the amnio as the risk of a down syndrome baby was equal to the risk of miscarriage. I now had my scan at 20 weeks and was told by the specialist that everything looks in order and this scan is generally 97% accurate which was good enough for me.

So don't worry, if they haven't pointed out anything to you, your baby should be in perfect health. Enjoy the remainder of your pregancy and don't worry

 

[NathansMommy]

I was not supposed to be a high risk for defects because we lost our first one to Trisomy 13.. With my 2nd, he was a 1 in 4 chance of having downs and i was given a 99% chance that this would not happen again from genetics dept.. but they thought again we were going to get through it. I opted for a CVS at 13 wks which didnt get any results and did an amnio at 16 wks for peace of mind. I know what it is like to bury my 3 wk old son and I will be doing the testing again this time around. By the way, my son did turn out alright even though he had the markers for downs.. ie no nasal bone and such. He just had a small nose.. LOL.. Take care and talk to your doctor

 

[sunshine007]

Im so torn about genetic testing. i just turned 39 and its my first pregnancy. It seems there are alot of false positives. I dont know what is better

 

[cillybean83]

i was told that my first born had DS...we didn't have the ultrasound to confirm but they said due to measurements and such they were almost convinced he had it...he was born 100% fine...i sincerely question how accurate ultrasounds are and like you, the risk of an amnio wasn't worth it to me. DS or not, he was my son and I loved him no matter what he came into the world with or without. I'm sure your fine hun!

 

[Mazmos]

Hi Girls,
I am in the same situation. Based on my age alone (37) they gave me a 1:220 chance of downs, but when they checked that against my bloods, my risk increased to 1:120 chance. My bloods were:
AFP 0.59
HCG 1.14
Estirol 0.79
The midwife said the 'perfect' figure for all the above (calculated by a computer programme) should be 1 for each of the hormones. As my AFP and Estirol are lower than 1 and my HCG is higher, this increased my risk.
I have been so worried, but have started trying to think on the positive side, that my risk is less than 1%, and the other 99.2% is on my side, but I still have it in the back of my head that something could go wrong
We have also refused the amnio, as don't think we would be able to terminate now (18 + 3) but have been told our 20 week scan will look for soft markers thay may indicate Downs.
There are a lot of maybe's from the midwives so just hope that all is well with my little Bubs
Maz 18+3 xxx

 

[SuJo]

Hi everyone. Just wanted to share my experience on this topic. I'm 30 and found out on Saturday that the results of my double test show we have a 1:239 chance of the baby having Downs so were booked in to the hospital yesterday to meet the consultant. We had a scan on which everything looked normal but the doctor made sure we understood that the only way to know for sure is to have the amnio so although we were pleased the scan looked fine she said it doesn't change our statistic. Anyway, the staff were lovely and left us alone to make our decision, we were both really emotional but decided not to risk the amnio and to be honest as soon as we decided that I felt like a huge weight had been lifted. We were so happy and excited until all this happened and now we just want to get back to that feeling and enjoy the rest of the pregnancy, hoping for the best but knowing if the baby does have Downs we'll cope and love our little honeymoon baby just the same. The nice news is that we were desperate the find out the sex and now know it's a boy x

 

[Szaffi]

SoJo, our situation is almost the same. I've worried a lot - in first tri about MC, and in second tri about DS, and I've felt that it made it near impossible to enjoy the pregnancy. I managed to calm down in third tri, when I realised that now we're definitely doing to go ahead, and deal with whatever happens - we should find out soon enough.

I hope you'll manage to get back to enjoying your pregnancy soon

 

[blackthickpea]

it's amazing how many other women are in the same boat as each other thank God for these forums and ladies let,s just pray for each other