Testing for Downs Syndrome?

Kvalletta13 · January 2014

Had my first ultrasound yesterday and we heard the heartbeat!! Huge relief and big milestone from our loss in November. My doctor asked if we wanted to do a Down's syndrome blood test. Is anyone else doing this? My DH and I feel we want to find out just in case so we can be prepared for it.

JSS1002 · January 2014

We opted out of all genetic testing last time and will do so this time as well. it is a personal decision, and we had our reasons! But most of my friends have this done with their pregnancies.

dana2die4 · January 2014

We didn't do the test on DS and we will opt out this time as well.

Starbear06 · January 2014

I did this screening with DS and my odds came back high at 1:13 for Down's syndrome. We opted for a level 2 detailed u/s along with an amino since we wanted to know for sure and be prepared. Turns out the amino came back negative...I may opt out of the genetic screening this go around. It was a very scary and stressful time for us.

rockychryslerb2010 · January 2014

dana2die4 said:

We didn't do the test on DS and we will opt out this time as well.

this

GlitterMuffin914 · January 2014

We talked about it and I don't think we'll do anything beyond what can be found from my bloodwork. Neither of us have any history on either side of our family trees of any genetic concerns. We both also did a genetic test that breaks down how likely you are to have/develop certain disorders and diseases, and how likely you are to pass them down to your children. There was absolutely nothing of concern there either, so I think we'll pass. If something unexpected happens, well, we will deal with it when it happens!

FloridaSun82 · January 2014

Our doctor recommended it, so we're going to. The Panorama blood test is only $195 and it checks for a few chromosomal abnormalities and will tell the sex. I'm taking it next week. We are not so concerned about Down's, but there are some more severe abnormalities that we would definitely need to be prepared for.

Campow83 · January 2014

We are opting out. My brother has Down syndrome so that might make people surprised that we aren't but I know that I'm going to keep my child either way so I don't really find a point. I'm already prepared to deal with it from personal experience should that be my child's destiny.

beck12803 · January 2014

We've never done the testing and don't plan to this time either. Too often, the orginial test comes back abnormal then you're sitting there stressed waiting for the more intense test to say it's all okay. For us, there's no way we could prepare ourselves beforehand and no matter what, the baby is here to stay. :-)

It's such a personal decision and one that you're going to get strong a opinions either way. Good luck with your decision.

Kvalletta13 · January 2014

This is what I am doing as well.

mrsdanielleM2010 · January 2014

Opting out here. We wouldn't get an amnio, and when I told my Dr. that, she said not to do the blood tests, because without further testing they would potentially cause us a lot of unnecessary stress.

bookqueen · January 2014

We didn't do it for DS, but we will this time. Just want to be prepared.

julestony · January 2014

Our doctor recommended the blood test and nuchal translucence ultrasound due to an immediate family member recently have an MC with a Downs baby.

DogfishHead · January 2014

We opted out with DD. However due to the shitstorm we went through from week 21 to birth, I might do it this time. I do not want to go through that nightmare again.

Rnmischele · January 2014

I will do the AFP and quad screen because I am 36. I never had a problem with my other two and will not risk an amnio if I can help it.

Ciardasully · January 2014

I will be having the blood tests. I am 35 and I have a paternal uncle that had Down's (though my grandmother had him at 35 but she had two "norm al" sons after him, one at 45!). I won't do anything more than blood testing and U/S. No amnio or CVS for me.

SingleMom31 · January 2014

We did it with our first and likely will so it again with this one.

lbonga1 · January 2014

We tested with our first because my fiancé is adopted and doesn't know his blood family's medical history. So we wanted to be prepared if need be. This time we'll test again only if my OB recommends it.

BookitBoo · January 2014

We did not test with our son, but we are considering testing with this pregnancy, just to be better prepared for the baby that is coming. We haven't really discussed it at length so I'm not entirely sure if we will or won't

Texasgurly0313 · January 2014

We are going to a group information session next Thursday, and we will decide then if we are gonna do it or not. We don't have a history on either side, but I would like to be prepared in case something of concern does come up. DH is more hesitant because of the risk of false positives.

shutaff · January 2014

@Floridasun82, I just looked up the Panorama test. Are you having it done at your doctor or ordering it yourself?

coffee bean · January 2014

I'm also having the blood test done to check for abnormalities - scheduled for march 5. Opted out the first time because there weren't any non-invasive approaches available.

TinkL0ver · January 2014

I'll be getting non-invasive tests and my SO will be getting a blood test for Cystic Fibrosis so we will know if our child will be a carrier or have the disease (I have CF so no matter what our kid will be a carrier).

Just putting it out there, please try to use people first language when talking about chronic illness or genetic disorders. Example being, baby with downs syndrome instead of a "downs baby".

DogfishHead · January 2014

I hate when that comes up. Getting testing done does not mean that you are going to terminate if something is wrong. And not testing just because you would enver think to terminate seems silly to me.

lily8543 · January 2014

We didn't have any genetic testing done with my DS. My OB felt like the odds of us getting a false positive was higher than actually having a true positive (obviously we were low risk). I guess I'll do whatever he recommends this time.

bumpuser5078523 · January 2014

We are passing on the testing. If some markers appear at our anatomy scan, then we will look into it more.

FloridaSun82 · January 2014

shutaff - I'm doing it through my doctor's office. It was his recommendation.

Ritzy19 · January 2014

We will be doing the screening.

JD83 · January 2014

We will be getting the tests. I wouldn't even agree to start TTC until DH and I had genetic testing done. We did 23andMe, and while I know it's not 100%, I still trust private enterprise more than the FDA. I went into that knowing that most commonly occurring genetic abnormalities result from spontaneous mutations, so the sooner we know what's going on, if anything, the better we will be able to make our decisions/preparations.

jenjohnandcody · January 2014

There is relatively new testing that can be done after 10 weeks, cell free DNA testing. It is out there as a few names like Harmony and Materni21. It is a simple blood test you can have done that provides results on different trisomy defects, one being downs syndrome. I'm opting for this option rather than the more invasive CVS or Amnio. And it is very accurate. Good luck with the decision.

KAYJAYBABAY · January 2014

We opted out with my DS, but this time around is different since I'm the one pregnant with a history of blood cell issues. We haven't made a decision yet, but the OB will do it around 10-12 weeks if we want. It won't do anything but prepare us, so I don't think it's a bad idea...

mrsdanielleM2010 · January 2014

SmileyGirl18 said:

mrsdanielleM2010 said:

Opting out here. We wouldn't get an amnio, and when I told my Dr. that, she said not to do the blood tests, because without further testing they would potentially cause us a lot of unnecessary stress.

@mrsdanielleM2010 - Even if the blood tests (combined with the u/s) come back with red flags, new advances make amnios totally unnecessary. There are several blood tests that can give you definitive information. I am very surprised your doctor gave you that advice.

Yes, after reading this thread I have questions about non-invasive testing. My Dr is still the fertility specialist gyn only, we haven't picked our ob yet... I'm chalking up this advice to it not being her specialty. The thread has been very helpful!

jailrn2000 · January 2014

We chose not to test with my first pregnancy. This time around I asked my OB if any positive test results would lead to changes in treatment during the pregnancy. She said a positive result for Down syndrome would lead to special scan of baby's heart later in pregnancy. If that showed abnormalities, I would not deliver at the small hospital in my small town, but at a larger center where a neonatal cardiac surgeon would be available. If tests were positive for neural tube defects, a c-section would be done rather than vaginal delivery to cause less trauma to baby.

I know these are worse case scenarios, but something that was never mentioned my last pregnancy, and definitely giving me something to think about. We are still undecided.

Anybody else given this or similar information by their doctors?

FloridaSun82 · January 2014

1983lindsey - No, he didn't give any specific reasoning for recommending it. I don't think we have risk factors, but I do think that he's just a VERY cautious doctor. I called Panorama and they told me that the price is $195, as long as you submit it to insurance - whether insurance will cover something or not. For that price, it was a no-brainer. Some of the other ones are more expensive and I don't think we would have done them unless some of the later scans came up with risk factors.

Ceridwen21 · January 2014

We are testing. I want as much health information on this baby as possible.

TheNutt · January 2014

Has anyone been able to get these new genetic tests covered by insurance?

fernane · January 2014

I didn't with DS and undecided if I will this time.

iam3jenn · January 2014

We are undecided, but leaning towards opting out. I am 35, so OB gave us a brochure about it when we went Tuesday. I will ask more questions when we go back Feb. 5 before we make a definitive answer. We know that we will not do any invasive testing. No risks in our family history, but age is a factor.

I know that I am a worrier. If I know that there is a risk, I may worry more than not knowing. (I know there is always a risk, but knowing that there is an increased risk...)

Not sure yet...

JD83 · January 2014

TheNutt said:

Has anyone been able to get these new genetic tests covered by insurance?

Tricare Prime covers them, for now anyway. My OB just put the tests into the computer and if I choose to go to the lab to get the blood tests, I can.

minervam830 · January 2014

We will be doing the NT screening because its an additionally covered sono and chance to see baby. We did it with DS as well.

dezbear · January 2014

Dh and I were just talking about this. We didn't with DS and I don't think we will this time around.

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