First Trimester Downs "Risk Assessment" Question

[Mrs. Charming]

I guess this is bothering me so much because of the pressure. Why pressure me so much? Do I look like I have birth defects or something?! And the thing is, it's not even the Dr, I haven't seen her personally since November. I've just been seeing the nurses for my ultrasounds! This "testing'' seems to be just standard, these packets are in every exam room. I know they are going to ask me *again* on Thursday... and I thought I had a good defense last time by saying our Quad Screen and other tests were fine... but that wasn't good enough. I know I don't want a CVS or amnio (unless the amnio is absolutely necessary.) They're risks I don't want to take... I've already had placenta problems with DD, and I'm not going through THAT again. And, I don't want to terminate. No way. We tried for a LOOOONG time to get this baby, I love it already.

Even the brochure says "Please remember that if your test result does not fall within the normal range, it only means that further testing may be indicated." So why am I going to bother?

I just need a good reason to tell them why I don't want this!

 

[Mrs. Charming]

I too passed on this test when i had my kids....did not make a difference to me either way so did not need the extra stress.....i would deal with what i was given at the time as i am a firm believer that you are never given more than you can handle. Now it would have been totally different had something shown up on a ultrasound, then i would have wanted as much info as i could have gotten previous to birth.

Good Wishes to you for a happy and healthy pregnancy and new baby!!!

I totally agree... if something shows up on an ultrasound, I definitely want to know everything I can previously, but to go through all this stress and hoopla for "screening" purposes... it makes me queasier than I am already.

Thank you for the good wishes!!

 

[PrincessKsMom]

Mrs. Charming, you don't NEED a defense. It's your business, your body, your baby. Firmly and directly tell them NO I am not interested in having this test. Please don't ask me again. You don't owe them an explanation other than giving them your decision. If they continue to pressure you, ask to speak to the doctor, the office manager, or find another doctor. Being pregnant has it's own stresses to deal with and this isn't helping any.

 

[Mrs. Charming]

If the results of the test (positive or negative) wouldn't change your behavior or attitude towards the baby, then why bother doing the test?

Congratulations!

Thanks!! It wouldn't... no way. I love the little bun bun.

I got the test with my older son. When I got preg again, I passed. The rate of false positive is quiet high, and frankly it would not change my feelings about the pregnancy/baby. I also passed on the u/s screening. Once again, false positive rate, and it would not change my feelings.

Congrats on the baby! Good luck!!

The thought of a false positive thing is terrifying! ALL that stress for nothing!!

Thank you

Congratulations <3

It was right - your baby had a 1 in 42 chance of having Downs - chances that he didn't were in your favor. It's really not a positive, it just means there is a bigger chance than say someone who tested to have a 1 in 1000 chances.

OP, what test are they talking about? I had a nuchal translucency scan with my twins, non-invasive, and I hear many OB's are no longer suggesting amnio for those who have this test, because it's pretty accurate. I felt so much better after having it.

The test is a blood test by mail... Downs, Trisomy 18 &13, they're calling it "Ultra-Screen." That's about as formal of a name as they give it. It's a packet with instructions, a brochure, a how-to, and some lancets/gauze/alcohol wipes, and a form to mail in and put the samples on. How can this be "ultra" accurate??

I have no problem doing the nuchal fold test, since it's my actual baby they're measuring, not just my DNA and a crap-shoot style odds.

They're just making me feel like a bad parent for not doing this! I never had this kind of pressure before, especially about a test like this.

I was offered it with my twins.. But I passed on it. We had tried for those babies for so long.. it wouldnt matter to us if anything was going on with them.

Exactly... we tried for EVER to have this baby. I don't care what it comes out like, I am going to love this child to bits.

 

[Mrs. Charming]

Mrs. Charming, you don't NEED a defense. It's your business, your body, your baby. Firmly and directly tell them NO I am not interested in having this test. Please don't ask me again. You don't owe them an explanation other than giving them your decision. If they continue to pressure you, ask to speak to the doctor, the office manager, or find another doctor. Being pregnant has it's own stresses to deal with and this isn't helping any.

It totally isn't helping! Thankfully DH will be with me, and he's much more assertive than I am. I can be a wuss at times. Thankfully, this is only the Reproductive Endocrinologist, not my happy-lovey-crunchy midwives. I stop seeing the RE at 11 weeks.. sure, I'm happy they helped get me pregnant, but they don't own me! LOL

They're just so pushy with the genetic counseling.. yikes. And secondly, why don't they test for this BEFOREHAND?!! Gah!!

 

[HunnyJar]

Well, my husband and I just found out that we are pregnant again a few weeks ago. Last week I had my first Dr's. visit and my Dr. asked if I wanted this test. I told him we would love our baby no matter what and since our chances are really low we would opt not to do them. Honestly, for me all I would do is worry while we waited for the test results and I don't really need any added stress right now.

If you know you will feel the same way and if you Dr. isn't pushing you to take the test, I would say.. Skip it. Enjoy your pregnancy! And congratulations!

 

[Mrs. Charming]

I skipped it with no regrets. Too many false positives and I wouldn't have an amnio or terminate anyhow, so I felt like there was no point for me. My healthy little girl is asleep on my lap as I type this.

Awww! I miss those days! Enjoy your little girl!!

 

[Mrs. Charming]

And that's one other thing. If they came to me and said, "You know, we have reason to believe that you should do this screening because ___, ___, and ____." If they gave me a reason to do it other than that's just what they always ask their patients, I might feel a tad differently...

 

[ginnymack]

First of all Congratulations!

I opted for all of the testing that I could get! On one test, the ultrasound tech found a major downs marker (nucal fold thickness) and we were referred for additional screening. Everything turned out fine, although I was concerned for a week, until we got the test results. Given the semi false positive we had, I would still opt to do the test again. I am a little (ok a lot ) type a and if I was going to have any special issues to deal with, I wanted to be armed and ready with as much information as possible. More information makes me feel more in control - even if it is a situation that I have no control over. Also, I wanted the moment they put the baby in my arms to wonderful - not an uh-oh we have a major problem we did not expect. I felt like I would be dealing with enough just dealing with a newborn without any surprises. Also, if there were any neural tube defects that could benefit from a c-section, I would want to know that too. I, too never would have terminated the pregnancy. But, for me, not knowing would have been more stressful than knowing something was wrong and preparing myself and my family to deal with it! Of course, that is my own quirky personality - you know yourself best!

 

[MinnieForMe]

I made the mistake of having the test. My results came back as 1:16 that my daughter had Downs. My U/S also had a warning sign which were 3 holes in her heart. They were closed by my 9 month u/s. We would not abort no matter what and wouldn't even risk the pregnancy by having an amnio to confirm or deny the first test.

The result was a very anxious, long pregnancy. I prayed constantly which wasn't a bad thing but the worry was for nothing. My daughter was born perfectly healthy.

I know it's a personal decision but I would never have that test done in another pregnancy!

 

[Ciciwoowoo]

The advice from my perinatologist:

You need to decide what you want to do with this info. It sounds as if you have already decided. The only way to be 100% sure is to do the amnio. The amnio carries risks of miscarriage.

I chose to take the FIRST test which was a blood test and they also measured the nuchal thingie. Both came out fine and so I never tried to pursue anything further. Just hope and pray for the best!

Good luck to you!

 

[ferrytale]

My doctor had sent me for a "sequential screen" which I think is the same test, just called something different. He explained that this test is MUCH more accurate(gave me the % but I forget) and said that the chances of false positives are very low with this test, as opposed to the just the blood test that I had with my son 5 years ago.
We opted for it b/c we wanted to know so we could be prepared if there was anything - but it wouldn't change how we felt about the baby.
Best of luck, no matter what that baby is going to be loved and things will work out how they are supposed to!

 

[MandM-Mom]

No advice, but a happy mom to a 3 and 1/2 year old princess with Down Syndrome.
I had the standard triple screen 1/5000 chance of DS, no indicaters and 27 yrs old, surprise on delivery day for us but she is a fighter and has taught me more in 3 years than I learned in 27!

My Little Tinker-Belle, AnnaBelle!

 

[mom2grace]

I also chose to skip the tests, with 1st pregnancy had a very $$ focused OB group. It's also about $$, the tests can be expensive and your OB could benefit.

(I don't know that yours is, but mine did! They were affiliated with the lab, I felt like moo-ing in there, I was their cash cow!) I hightailed it out of there for pregnancy #2.

 

[thebeesknees]

I had a lot of screening due to having a sister with Down Syndrome. My nuchal scan/quad screen showed 1 in 10 chance of having something VERY wrong (as in, life-threatening). Totally freaked me out, but DH just kept saying that means 90% chance the baby is fine. I knew we would not terminate, so we declined further testing because if the baby did have something seriously wrong, the doctor said it would become obvious with further ultrasounds, and we would find out, just a bit later, but well before delivery. The baby turned out to be fine at delivery, but if I had it to do over again, I wouldn't have had the nuchal scan. I worried for nothing, and felt very pressured to have further testing done, and it added a lot of stress that I didn't need in the end.

 

[Mrs. Charming]

No advice, but a happy mom to a 3 and 1/2 year old princess with Down Syndrome.
I had the standard triple screen 1/5000 chance of DS, no indicaters and 27 yrs old, surprise on delivery day for us but she is a fighter and has taught me more in 3 years than I learned in 27!

My Little Tinker-Belle, AnnaBelle!

She is absolutely adorable! She's gotta melt every heart she meets!

 

[cel_disney]

I am 14 weeks pg now with my second child and had the 'Serial Sequential Screening done'. This involves an ultrasound nuchal fold measurement and nasal bone review and blood test around 12 weeks and a follow on blood test between 15 - 20 weeks. The results are not released until after the first set of tests but it has a very low false positive rate and is the most accurate of the non-invasive tests.

If my numbers come back something statistically relevant (more than 1:100), I would probably spend some extra time preparing for the possibility of having a special needs child. My DH and I work full time and I would need to consider some adjustments to that to support extra doctor appointments and therapys and the like as well as make sure that I had a daycare provider that would also accept my special needs child and be able to provide adequate support for us just incase as well as making sure that our financial plans were aligned as well.

I realize that even with numbers much more favorable than that, anything could happen - but there would come a point where I would need to do some extra preparation. I need to go back to work 6 weeks after the baby is born and that would be a very short amount of time to cover all of my basis.

Good Luck with whatever you choose! Congratulations and Best wishes for a happy and healthy 9 months (or however many remain!!!)

 

[ireland_nicole]

I guess this is bothering me so much because of the pressure. Why pressure me so much? Do I look like I have birth defects or something?! And the thing is, it's not even the Dr, I haven't seen her personally since November. I've just been seeing the nurses for my ultrasounds! This "testing'' seems to be just standard, these packets are in every exam room. I know they are going to ask me *again* on Thursday... and I thought I had a good defense last time by saying our Quad Screen and other tests were fine... but that wasn't good enough. I know I don't want a CVS or amnio (unless the amnio is absolutely necessary.) They're risks I don't want to take... I've already had placenta problems with DD, and I'm not going through THAT again. And, I don't want to terminate. No way. We tried for a LOOOONG time to get this baby, I love it already.

Even the brochure says "Please remember that if your test result does not fall within the normal range, it only means that further testing may be indicated." So why am I going to bother?

I just need a good reason to tell them why I don't want this!

If you cannot sort this issue our with your OB, I would seriously look for another. You're early on a potentially long and sometimes unpredictable road, and you have to feel like your OB knows and respects you and your decisions. Hopefully this is just miscommunication, but if you can't resolve it quickly, I'd really look further afield.

No advice, but a happy mom to a 3 and 1/2 year old princess with Down Syndrome.
I had the standard triple screen 1/5000 chance of DS, no indicaters and 27 yrs old, surprise on delivery day for us but she is a fighter and has taught me more in 3 years than I learned in 27!

My Little Tinker-Belle, AnnaBelle!

She is beautiful!

 

[Red_Rider]

Hi,

I want to first say that which ever you choose is your choice and don't be pressured either way.

With our last baby we chose to have all of the non-invasive screening tests done because we had problems getting pregnant and wanted to have an "extra" ultrasound early in the pregnancy. When all of the tests came back, our son had a 1 in 6 of having Downs Syndrome. We were absolutely shocked. We got the call with the results just as we left the hospital when my nephew was born -- this put a whole damper on the day. My wife and I were a wreck -- this started the most stressful 6 weeks of my life.

We ended up meeting with the reproductive endocrinologist who went over the results with us and told us what our next testing options were. We ended up going to another screening ultrasound to look for "markers" and we had a amniocentesis to definitively give us an answer. After a stressful week of waiting we found out that he did not have Downs Syndrome. Four months later my wife gave birth to a beautiful and healthy baby boy.

After talking it over with my wife after all was said and done, we would not have these tests again.

I wish you all the best with your decision, and congrats!!!

 

[HunnyJar]

No advice, but a happy mom to a 3 and 1/2 year old princess with Down Syndrome.
I had the standard triple screen 1/5000 chance of DS, no indicaters and 27 yrs old, surprise on delivery day for us but she is a fighter and has taught me more in 3 years than I learned in 27!

My Little Tinker-Belle, AnnaBelle!

Oh what a cutie pie!! Isn't it amazing what kids can teach us?