Advice Needed, Ladies.

cmhawkins1709 · February 2014

I am pregnant, and I am guessing I'm around 5 weeks along, but I have PCOS and never have regular periods so I'm not sure. First day of my last period was December 16th, but I am almost certain we conceived January 15th. All ovulation tests I took in early January were negative, however. So ready to get an ultrasound done but can't get in until the 23rd. We had fertility issues with DD the first time around, so this is a whole new ball game, not having to use medication or anything to get pregnant. I'm very nervous...we had a miscarriage in January of 2011, and with DD we were monitored from very early on. I had six ultrasounds with her! Should we wait to tell everyone after he first trimester? That's our plan for now. Also, has anyone had the Panorama test? It won't change anything other than if there is something wrong, we can prepare earlier on...but if it is common to give false positive results I would rather not have it than worry/grieve the whole pregnancy for no reason...

rae_dylanzmom · February 2014

Congrats! Assuming you have a positive HPT? I only ask because you mentioned so many other details, but not that one. FYI, for my pregnancy, I didn't have any + OPK tests either during the month.

Lots of women/doctors don't do an u/s until 8-10 weeks... totally depends on the doc. The waiting is difficult, but if you can wait it out, there are fewer 'scares' about m/c and the OB can see a lot more in the u/s. I had a m/c, too, and the waiting was difficult; but better than the 'can't call it, come back in a week' that I went through.

Side note, in my area providers are VERY difficult to deal with these days, particularly if your plan is part of the ACA. I've heard about women choosing to go to a clinic/birth center to pay out of pocket until their own provider can see them. Not ideal at all, but part of the mess insurance/healthcare is right now. I only mention it as a consideration if, with your history, you do need to be seen earlier.

Not sure how PCOS effects pregnancy, but there are definitely some women here who know about that.

NIPTs (of which Panorama is one) are becoming more common, and you'll find lots of threads here about them.

MisstoMissus · February 2014

I agree with Rae re: the early ultrasound. From what I can tell, there's not much upside of doing one very early. Since it's not your first rodeo I hope that you can avoid stressing about inconclusive test results from your first appointment(s).

I have not done a panorama test personally, but I do think the error rate is higher than stated. The reason I think this is that I have had several friends get negative results during their testing, which turned out to be wrong. Many couples choose to terminate based on these results, so the data source for the accuracy of the tests is skewed. (Again, just my opinion-- talk to a real doc about this stuff, not just folks on the internet.)

rae_dylanzmom · February 2014

MisstoMissus said:
I have not done a panorama test personally, but I do think the error rate is higher than stated. The reason I think this is that I have had several friends get negative results during their testing, which turned out to be wrong. Many couples choose to terminate based on these results, so the data source for the accuracy of the tests is skewed. (Again, just my opinion-- talk to a real doc about this stuff, not just folks on the internet.)

Our OB mentioned this exact thing about the accuracy being a little overstated. I think he said that the error rate is higher in low-risk pregnancies, and they are only using high-risk pregnancies for their marketing purposes... but I would treat that as hearsay.

cmhawkins1709 · February 2014

Yes, 2 positive HPTs! We're really still in shock. PCOS makes it a lot more difficult to get pregnant because it causes abnormal or non-existent ovulation...and I had endometriosis as well, my husband had low motility. We had been trying since November of 2009. As I said, we miscarried in January of 2011 before I even knew I was pregnant...then didn't conceive our daughter until May of 2012 after an aggressive round of vitamins for DH, surgery to remove endometrial adhesions and 3 total rounds of Clomiphene.

Needless to say, the first go-around, we were very nervous, walked on eggshells the whole time, and I was considered high-risk because of my history. We were monitored constantly and I never had to worry about not knowing anything about my daughter because of the abundance of ultrasound appointments, so this pregnancy is needless to say pretty different. We're of course overjoyed that we were able to conceive without the use of Clomid or any other major measures, I guess it's just weird to think I won't get an ultrasound right away like I did with DD.

As for the Panorama test, DH and I are going to talk about it. Like I said, I'd rather not get a false positive and prepare for the worst and worry and hold my breath and grieve the entire pregnancy if absolutely nothing is wrong in the first place. That's a little ridiculous. =/

We didn't have an amnio, NTD test, or any type of blood test done with DD for that reason. Not even the scan for Downs. Just had recently heard about the Panorama and was hoping to get more information about it. It seems that it would make sense to know if your child had a chromosomal abnormality so that you could properly prepare early on. It's very hard to find a hospital that will treat a child with Edwards or Patau because of futility clauses--knowing early would give a parent time to find someone who would treat their child like any other human child.

MisstoMissus · February 2014

Here's the thing about "knowing early" with something like Down's Syndrome: There's very little you would need to do in advance to "prepare". If you feel like knowing early would help you emotionally, that's one thing. But remember that a lot of people get false positives and negatives in the testing.

Is there any reason you suspect that your baby might have genetic issues? I re-read your comments and you didn't mention any risk factors. (Yes, you mentioned your own health concerns but I am not aware if they would be markers of any sort of issue for the baby.) Have you and your husband had genetic screenings?

It's up to you if you decide to get the screening, but I would just be cautious that you're not putting yourself in a situation where you will worry more (or have false positive news) than without the test.

Sofia2529 · February 2014

MisstoMissus said:

Here's the thing about "knowing early" with something like Down's Syndrome: There's very little you would need to do in advance to "prepare". If you feel like knowing early would help you emotionally, that's one thing. But remember that a lot of people get false positives and negatives in the testing.

Your first statement isn't necessarily true. My friend had the test and it revealed that her daughter had Down Syndrome. Because of the early diagnosis, she was made aware of the elevated risks and was able to choose a hospital that had both a pediatric cardiologist and gastroenterologist on hand, the latter of which performed surgery on the baby the day after she was born because she had an imperforate anus.

To the OP, choosing when to tell others depends on what you and your husband feel comfortable with. There's no right or wrong time.

cmhawkins1709 · February 2014

No risk factors that I'm aware of indicate we might be more likely to have a child with a chromosomal abnormality. I guess you could say I have a lot of anxiety about that sort of thing, especially since two people very close to my heart have lost babies to Edwards and Patau. I also follow a lot of T-moms on FB, and I've always thought that if it ever happened to me I'd be prepared to fight for my child like they have theirs (so many doctors/hospitals simply refuse to treat because those children are not considered "compatible with life") ... As for Downs, it is helpful to know early so that if there is a cardio issue a hospital can be chosen with a great Pediatric cardiologist, like Sofia said. It may seem a little unnecessary to some, I just think it would be helpful to know. BUT, like I said. If the statistics show that this test has a higher false positive rate than I am seeing advertised, I would rather NOT get it. No sense in worrying and wringing your hands for no reason. I was hoping I could meet some ladies on here that had actually had it done to see how accurate their results were.

Flowerchica · February 2014

I've got PCOS and a child.... and I can tell you - while PCOS makes it harder to conceive, you can have a normal pregnancy. The main thing is to have your P4 test done early since women with PCOS tend to have lower progesterone levels in the first trimester ( hence the early miscarriages). Then going forward, we often have GD. I don't believe cysters have a higher risk of birth defects - our problems are usually with our bodies and not our babies

rainydayluck · February 2014

Frequent ultrasounds aren't going to do anything to prevent a miscarriage.

RachelCA29 · February 2014

Sofia2529 said:

MisstoMissus said:

Here's the thing about "knowing early" with something like Down's Syndrome: There's very little you would need to do in advance to "prepare". If you feel like knowing early would help you emotionally, that's one thing. But remember that a lot of people get false positives and negatives in the testing.

Your first statement isn't necessarily true. My friend had the test and it revealed that her daughter had Down Syndrome. Because of the early diagnosis, she was made aware of the elevated risks and was able to choose a hospital that had both a pediatric cardiologist and gastroenterologist on hand, the latter of which performed surgery on the baby the day after she was born because she had an imperforate anus.

To the OP, choosing when to tell others depends on what you and your husband feel comfortable with. There's no right or wrong time.

There are other things that test can determine the risk factors of besides Down Syndrome, that would result in decisions having to be made for the safety of mom, aside from baby. Just to keep that in mind.

As other's have stated the accuracy is hard to tell, they say 99.9%, but there are factors that could affect that. That being said, Panorama and similar tests are for detection, not diagnosis. They only give you a range of risk that you fall into based on the results. It's not a "yes or no" answer. If you fall into a high risk range, further, more invasive testing would probably be recommended. But my OB seemed very happy with our results, and trusted the accuracy of those. We are in a low-risk category though, so that might be why she was confident with the results.

I had the testing done and fell into the lowest risk category (1 in 10,000 chance) for every marker that was tested.

I also have PCOS and conceived out-of-the-blue. I had early ultrasounds, but as @rainydayluck said, that doesn't reduce your chances of a miscarriage, unfortunately

I had a dating ultrasound at 5 weeks (which was too early to accurately date) and then another one at 7 weeks. I had a couple more at 9 and 11 weeks to "monitor" at the fertility clinic we were getting our testing at, but I think they were more for my state-of-mind, because of a previous loss, than to actually monitor much (he was growing on track, that's all they checked).

bohemianlc · February 2014

I have a young cousin with Down's Syndrome, and my aunt has said that she is really glad she didn't take the test because she thinks she would have just worried for her entire pregnancy. I guess it's just a matter of personal preference, and I completely understand what previous posters in this thread are saying about knowing how to address specific risks for a child with special needs. I just thought her perspective was interesting.

As for when to tell people, I read in a book the other day that you shouldn't tell anyone before 12 weeks that you wouldn't inform if you had a miscarriage. I am eight weeks along, and my husband and I have told our parents and closest friends only because we know we would be open with them regardless of how the pregnancy turns out. I think it's really different for every couple, so do whatever makes you feel comfortable.

RachelCA29 · February 2014

bohemianlc said:

I have a young cousin with Down's Syndrome, and my aunt has said that she is really glad she didn't take the test because she thinks she would have just worried for her entire pregnancy. I guess it's just a matter of personal preference, and I completely understand what previous posters in this thread are saying about knowing how to address specific risks for a child with special needs. I just thought her perspective was interesting.

As for when to tell people, I read in a book the other day that you shouldn't tell anyone before 12 weeks that you wouldn't inform if you had a miscarriage. I am eight weeks along, and my husband and I have told our parents and closest friends only because we know we would be open with them regardless of how the pregnancy turns out. I think it's really different for every couple, so do whatever makes you feel comfortable.

This is really true. Keeping your pregnancy a secret from people that could support you best if you had a miscarriage can make it hard to tell them about it *if* it happened. And it's something you would need support for. We told our immediate families right away because we were excited, and having suffered a previous loss, we knew that if it happened again we would be okay with a) telling them the sad news after announcing such happy news and b) having their support and love to help us deal with it.

Flowerchica · February 2014

It really boils down to whether or not you want people to KNOW if you miscarry. For me - I can't stand secrets. They sort of eat at me - so I'd rather people know I was pregnant ( and I'm high risk) so I know miscarriage is potentially in the cards for me. I'm ok with that - because it takes away the power of the fear of a miscarriage. People around me know I'm comfortable discussing it doesn't have to be the elephant in the room. Not everyone feels ok talking about such personal things. To me that determines when you should tell folk. I didn't do a FB announcement last time - but we were on cervix failure watch for the whole pregnancy! This time around ... we're contemplating doing an announcement later on after we pass micro preemie risks ( 28 weeks) ..... maybe!

cmhawkins1709 · February 2014

I've been to the ER. Bleeding turned bright red. Probable miscarriage...trans-vaginal ultrasound showed a completely empty uterus. HCG level was only 111, indicating 2 weeks which doesn't add up to what should've been our conception date. Redoing HCG bloodwork Monday to confirm levels are dropping.

rae_dylanzmom · February 2014

So sorry for your loss.

cmhawkins1709 · February 2014

Thank you

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