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Old 11-21-2007, 04:38 AM   #1
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High risk result on screening for downs syndrome

I am 16 weeks pregnant in what has been an eventful pregnancy so far. I had a bleed at 11 weeks which thankfully settled and baby was fine at 12 week scan. I am 38rs old though and have just received the results of my screening blood tests for downs syndrome which came back as high - a 1:134 chance!! I was due to have an amniocentisis but couldnt go through with it as I was scared of having a misscarriage and scared of what the results would show. I am just waiting now for my 20 week scan to see if there are any soft markers for downs. has anyone else been in this situation? feeling very alone and scared right now!!

 
Old 11-21-2007, 04:49 AM   #2
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Re: High risk result on screening for downs syndrome

I have been through this. Actually I'm still going through this. I'm now 28 weeks along. At 18 weeks I had a Level 3 ultrasound which showed 2 soft markers for DS. I had previously declined blood tests. They told me my chances were 1 in 9. I was devastated. My blood pressure went through the roof and I started cramping. I was scared to death to have an amnio. About 1 week after this happened I had a Quad Screen which came back normal. I then had another Level 3 ultrasound at a different facility, different doctor. They only found 1 soft marker. My odds are now 1 in 154. Obviously I feel better about the situation but the fear of what might be has never totally gone away. You are definitely not alone. I hope things work out for the best.

 
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Old 11-21-2007, 05:04 AM   #3
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Re: High risk result on screening for downs syndrome

thank you so much for your quick reply - It is reassuring to know that others are going through the same feelings that I am - the fear of the unknown is terrible but knowing the risk increases things so much more. I try to think that my risk gives me a good chance of a healthy baby but it is difficlt to think that this may not be how thinkgs turn out. I wish you all the best for the rest of your pregnancy and whatever the future may hold

 
Old 11-21-2007, 06:05 AM   #4
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Re: High risk result on screening for downs syndrome

I never got the tests taken b/c there is such a huge chance of a false positive. I bled at 17 weeks and after a follow-up u/s HAD to have an amnio against my better judgment. I was, like you, so scared and afraid of a miscarriage, not to mention the fact that I was scared of the huge needle in my stomach. I was seeing one of the leading specialist in Philadelphia at the time and felt secure with them. They explained to me that it is not true that the risk for m/c is increased with an amnio. It's no higher than the normal risk w/out an amnio. The actual test, I found, was less painful or uncomfortable than an epidural. We were able to get results in 3 days. Yes, it was forever in our minds. The results would tell us if our baby was to survive or not. She was expected to miscarry and I was told if she did make it through the pregnancy, she probably had trisomy 18.

I just wanted to share my brief experience with you. My thoughts are with you and your family. Everything will work out the way it should. I have come to learn that the hard way Congrats on your pregnancy and don't stress. Do what YOU feel is right for you and your baby. I went with my instinct and didn't listen to the doc's when they told me I should abort the pregnancy. My baby was born Healthy and happy at 39 weeks.

 
Old 11-21-2007, 12:05 PM   #5
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Re: High risk result on screening for downs syndrome

I was terrified of getting an amnio (I am 36) and I was hoping I would never have to go through something like that but I had 2 soft markers for DS so I got one at 20 weeks.

I had my test on a Thursday and by Monday I was back to normal (working, exercising, etc..). Everything came back normal. Now, I just have to keep going back for additional ultrasounds to keep an eye on the soft markers.

One was a bright spot on the heart-which I hear is becoming more common and the other is the lower jaw seems underdeveloped--but my BF had the same issue when he was born. My BF is adopted and can't get his records so we don't know if its just something that runs in his family or if its truly a malformation of the lower jaw.

 
Old 11-22-2007, 03:53 PM   #6
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Re: High risk result on screening for downs syndrome

Definately high change of false positives! When my sister was pregnant, they told her that most likely according to her results, her child had downs. She had all sorts of tests done, and they all said the same thing. She had level 2 ultrasounds, which showed results consistent with the other tests. Finally, she had an amnio done just to get some difinitive results. Her amnio was negative, and her daughter (who is now 18 months old) is as healthy as can be.

 
Old 11-22-2007, 08:44 PM   #7
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Re: High risk result on screening for downs syndrome

Waaaay too many false positives for more liking. My Dr couldnt pay me enough to take that test! LOL
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Old 11-23-2007, 04:21 AM   #8
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Re: High risk result on screening for downs syndrome

Hi

Im so sorry you are going through this, I also went through this earlier this year, at the time I was 30 years old and my bloods came back a 1 in 27 chance of downs, I decided to go ahead with the Amnio and discovered everything was ok. During my labour my delivering midwife asked why I had had an Amnio (from my records) and I told her my triple screening bloods came back high risk and she said she would never have them done as they are soooo unreliable (and thats from a midwife!!). On the flip side, I know someone who had the blood screening and hers came back fine and she went on to have a DS baby, so it does just prove how unreliable these tests are, but they are what they say, just screening tests and dont give a positive/negative answer, unless you are prepared to have an Amnio/CVS to determine. I do think every possible avenue should be explored between midwifes/doctors and their patients before these screening tests are performed as now you could be unnecessarily worrying for the rest of your pregnancy. I do hope everything turns out ok for you, I gave birth to a healthy baby boy 07-07-07 so he's our lucky lil one also Take care, and I know it's easier said than done, but try not to worry too much and let this spoil the remainder of your pregnancy.

 
Old 11-23-2007, 08:15 AM   #9
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Re: High risk result on screening for downs syndrome

Quote:
Originally Posted by mumovhann View Post
Hi

I do think every possible avenue should be explored between midwifes/doctors and their patients before these screening tests are performed as now you could be unnecessarily worrying for the rest of your pregnancy. I do hope everything turns out ok for you, I gave birth to a healthy baby boy 07-07-07 so he's our lucky lil one also Take care, and I know it's easier said than done, but try not to worry too much and let this spoil the remainder of your pregnancy.
I totally agree. With the high chance of false positives, I really wish that some Drs werent so adamant that their patients have the test. My Dr insisted I have it on 3 different occasions and I had to strongly refuse 3 different times. I knew that if the screen came back as positive, I didnt want an amnio and I would just worry the rest of the pregnancy.
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Old 11-23-2007, 09:48 AM   #10
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Re: High risk result on screening for downs syndrome

I just think people need to know exactly what they are getting into before agreeing to the blood tests or Level 2 (or 3) ultrasound. I'm 36 and pregnant with my 2nd. I was 33 when I was pregnant with my 1st. During that pregnancy I declined the blood tests and my doctor never said anything else about it. When I declined the blood tests this go around my doctor immediately starting pushing the ultrasound. I agreed because I thought it was going to be like all the other ultrasounds I've had done. I had never heard of DS markers. I should have done my research before agreeing to have this done. From what I have read since having the ultrasound done is that it is very controversial and causes a lot of undue stress and panic.

 
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