Early Risk Assessment - what are your thoughts? « Back to Group Discussions

[outerspacemama]

We are trying to decide whether to do the early risk assessment ultrasound which screens for Downs as I understand it. I think we did it with #1 and didn't with #2. But then, I'm now over the magic maternal age of 35. 

The main thing I'm thinking is that I wonder if a kid with Downs would affect where we give birth. We are currently planning a homebirth. 

But then again I totally hate tests because they make me so anxious. My SIL had a bad experience with this test where they said her baby had a high likelihood of Downs but ended up being 100% normal. 

What are you mamas thinking?

[bearandotter]

For me it comes down to this:

Am I willing to take the risk of spontaneously miscarrying a healthy child (quoted at around 0.5%) secondary to amniocentesis for the knowledge of knowing something is wrong with my child?

If the screening comes back positive, with a known fairly large change of false positive you are almost forced into an amnio. Amnios carry a risk of spontaneous misscarriage. That could be the miscarriage of a healthy child (or one with a genetic disorder).

Since I would not terminate a pregnancy, even if I knew the baby had problems, this is not a risk I am willing to take. 

I therefore refuse the early screening panel combined with u/s. 

[sky_and_lavender]

If Downs is your main concern, you might consider the newish MaterniT21 PLUS test. 99% accurate blood test after you are 10 weeks pregnant, no amnio or CVS needed. It screens for 3 serious trisomies including Downs. If you have insurance but your insurance doesn't cover it, the company guarantees you'll pay a max out of pocket of $235 (otherwise it's around $1200). I did it and am really glad I did. Less than a week of waiting and a very easy process. Many docs don't know about it apparently, or would rather do the less accurate u/s (etc.) or more risky and comprehensive amnio or cvs themselves, I guess. My midwife got in touch with the company, who sent her the sample collection kit and she came to my house and took the sample. Very simple and easy--you get a negative or a positive. And put my mind to rest.
 

[CrystalMarie]

Originally Posted by bearandotter 
...

Since I would not terminate a pregnancy, even if I knew the baby had problems, this is not a risk I am willing to take. 

I am in the same boat at Bearandotter. 

Even if we knew the baby had problems, of any kind, we would not choose to terminate it. Therefore, not knowing is better for us.

With the concerns of having a homebirth, we trust our midwife to make the best decisions possible for the safety of our baby. We are not located too far from a hospital if outside intervention was absolutely necessary once labor began or if there were complications after baby is delivered. 

Crystal Marie

“above all things have intense and unfailing love for one another, for love covers a multitude of sins ” 1 peter 4:8

[BabySmurf]

I think numbers coming back "high" means different things to different people. I just had the blood teste/ultrasound to see where we stand. I. Wontvdo an amino no matter what, but if the other tests come. Back high, then I would like to do research about it now. I didn't do it with my first...I would think that it depends on how you would handle the results

[Tenk]

The test that she's (the OP) is suggesting doesn't require an amnio ... it's an ultrasound combined with blood draw (from the arm!) just as any other blood draw.  The test has ZERO risk of miscarriage at all.  I did the test with L and O (who passed away at 18w gestation) and both times negative. 

7+ years ago they only offered the "Triple screen" testing around 18 weeks which consisted of a blood draw and it had false positives or caused undue stress.  Our 4th DC passed at 38w gestation (at birth) and we were told at 20w that she has a 1/24 chance of Down's even though at my age it should have been 1/1000.  They sent us for an amnio and once we got there and discovered the risks we opt'd out of having it done because we loved her no matter what.  We lost her anyway.

I will be having the above referenced test on December 18th at my next appt and my high risk OB will do the ultrasound and the nurse will take blood from my arm.  I am doing it so we can be prepared not because we wouldn't keep her (I am assuming she's a she).
 

[pokeyAC]

We're doing the blood test along with the NT scan.  If the odds come back high, we will consider further testing.  We both do not feel comfortable with amnio or CVS to start with because of the risk of miscarriage and because they are so invasive.  Downs would not be a big deal, but the other trisomies can be much more serious.  I believe the tests also look for risks of spina bifida and anencephaly.  Some spina bifida can be repaired.  Even if you don't plan on terminating with any of these conditions, it might be good to have time to mentally prepare for them.  I don't know if babies with Downs have trouble at birth, but they do have trouble breastfeeding, so the condition may or may not affect your ability to have a home birth. 

Part of what makes testing difficult is that it is stressful waiting for the results.  If you don't need the extra stress, it may not be worth it.  I think if I were in my 20's I might feel a little differently, but I'm 37 and we worked very hard to get pregnant.  I want to be prepared, but I don't to do anything that could endanger the baby.

[BabySmurf]

Originally Posted by Tenk 

The test that she's (the OP) is suggesting doesn't require an amnio ... it's an ultrasound combined with blood draw (from the arm!) just as any other blood draw.  The test has ZERO risk of miscarriage at all.  I did the test with L and O (who passed away at 18w gestation) and both times negative. 

7+ years ago they only offered the "Triple screen" testing around 18 weeks which consisted of a blood draw and it had false positives or caused undue stress.  Our 4th DC passed at 38w gestation (at birth) and we were told at 20w that she has a 1/24 chance of Down's even though at my age it should have been 1/1000.  They sent us for an amnio and once we got there and discovered the risks we opt'd out of having it done because we loved her no matter what.  We lost her anyway.

I will be having the above referenced test on December 18th at my next appt and my high risk OB will do the ultrasound and the nurse will take blood from my arm.  I am doing it so we can be prepared not because we wouldn't keep her (I am assuming she's a she).
 

You are totally right that is doesn't require an amino, but some practitioners can be quite persistent about recommending it if the numbers are on the higher end, and it's likely OP's are due to age alone.  My Mom was pregnant at 40 and agreed to the blood test, and as expected the numbers came back "high", so they really pressured her for the amino. Hard.  According to the blood result her numbers were "elevated" but the risk of miscarriage due to the amino was higher....so it all depends on how you would deal with the results, and how much stress it would alleviate or create if the numbers aren't ideal, and how set you are in what you would do if the numbers weren't ideally where you would like them.  I feel like sometimes it's easier to say no to the testing in general sometimes, especially if it wouldn't really change the way you were going to deal with the results. 

[jr'smom]

We wouldn't terminate no matter what and I wouldn't want to stress during pregnancy...so no test for me.  Even though I'll be 40 by the time this little one is born, the doctor glossed over this quickly.  Incidently my mother was told something was wrong with me (sorry I don't know the details and she's passed on now.) It was recommended she terminate her pregnancy.  Nothing was wrong.  I'm sure glad she didn't listen!

[Murph12334]

It's a very hard one for me.  I am getting the testing done (the blood draw one).  If it shows high numbers then I'll likely do more testing.  What to do after that?  Not sure.  I do not think I could terminate a pregnancy even then though.  Reality says, if something is wrong that I should terminate.  Because in my situation I'm a single mother of two already.  Though, like I said, even then, not sure if I could actually do it.  My thinking would be what if the test was wrong (since they do give false positives) and if I kill the baby, then I just killed a perfectly fine child. 
I just hope the testing comes back good so that I do not have to face that.

[willsmomm]

The only test I do is ultrasound. I used to do them and went through dealing with false positives and learned I can't handle the stress of all that. With my last pregnancy, the u/s caught my son's cleft lip and we spend the rest of the pg stressing and not knowing if his palate was affected and what exactly we were facing. It was awful and I really go back and forth about whether or not I would have wanted to know during pregnancy. BTW, we still ended up having him at home. My midwife just made sure she was prepared to deal with any extra challenges he might have. He did great!

[zjande]

Originally Posted by jr'smom 

We wouldn't terminate no matter what and I wouldn't want to stress during pregnancy...so no test for me. 

I feel the same way. No tests for me either, but we do get the 20 week ultrasound.

[spotty4]

I am doing the blood draw and ultrasound in mid-December.  I will be 35 at birth and this is #1.  I am also a scientist by profession so I naturally gobble up data data data!  No matter the outcome of these tests I will be able to utilize the information to our advantage to prepare accordingly.  To me the tests are not stressful.  They are not the type of test that I can prepare for or do anything to change the outcome.  If the baby has an abnormality it is b/c of the health of the sperm and egg, nothing that I have done wrongly or insufficiently.
 

[JNajla]

I have the NT ultrasound/ blood test on Thursday.  If insurance pays for the MaterniT21 test, I would want that (so I could know the gender too!) but I'm not sure if my doc is aware of it.  I haven't thought about how to proceed if there are issues.  It is too much to comprehend. 

[Espion]

We had the NT last week. I, also, would not terminate, but I'm the type that would rather be prepared now than surprised and scared later. Thankfully our little bean was fine, so I cannot honestly say whether or not I would have agreed to an amnio.

The NT can signify a few things, but the most common is Down's. On this ultrasound they can also note the cord insertion, the spine, and rough anatomy. There are things that can sound devastating (like gastroschisis, spina bifida, etc) but they can be fixed. And there are things like spina bifida that may affect your lives profoundly or hardly at all. (SB kids are near and dear to my heart.)

[womenswisdom]

I had blood drawn for the Harmony test today, which is similar to the MaterniT21. I had genetic counseling prior and found out that it's highly accurate, although still considered a screening test, since they are not looking at the genes themselves but only whether certain chromosomes (from free DNA present in the mother's blood from placental cells) are present in higher numbers than a "benchmark" chromosome (#9). Over 99% of women who have the test either get a result of very low risk (1 in 100,000 I think it was) or very high risk (99+ in 100). For me, that information is enough to make a decision about where to give birth, though I would not terminate.

[outerspacemama]

Thanks for your replies everyone. In the end, we've decided to not get any of the early tests. Part of that is just my own anxiety level with testing. We carefully considered it and I totally understand the rationale in all directions. 

[spotty4]

We just had our NT scan today.  Since the results came back well within the normal range (they took 5 measurements and all came in under 1mm) we opted not to do the blood draw.  The genetic counselor did talk about the MaterniT21 test but indicated most insurances do not yet cover the test since its so new.