Did You/Would You Get the Sequential Screen in 1st Tri?

LuckyAngel07 · January 2014

This was something the OB nurse brought up with me this morning. She said it's something to think about for the following reasons:

It's noninvasive - just a scan and related b/w.

If it comes back positive for anything, it doesn't necessarily mean anything is wrong, but we'd have to consider either:
A) Worrying about it for the rest of the pregnancy in case something might be wrong

Getting the amniocentesis with its associated risk of m/c to get a definitive answer

Now of course, if we do the screen and everything's clear, then we've got nothing to worry about and nothing further to do re: testing.

So, did you do the sequential screen? I'm considering doing it, but I'm totally gun-shy about the amniocentesis (if it were to be a consideration). I don't think I'd do that, but I don't want to have some positive test result looming in the back of my mind the rest of this pregnancy.

I appreciate your thoughts!

botanicalbliss · January 2014

Yup, we did all blood work and scans offered to us. Lsquared had a really good explanation of why you would do these things. Maybe you can search for it? The overall reasoning was that if there is something wrong, they might be able to do something to fix it whereas if you wait to catch it at your a/s it might be too late to fix a fixable issue. Also, I would want to know if there was something going on like DS or some kind of defect so I wasn't shocked after delivery.

cinderin · January 2014

Are you talking about the 12 week scan? The NT scan. Then, yes we did.

sparklingdiamond · January 2014

We did the NT scan and bloodwork even though we were paying out of pocket for it. If insurance covered it, I would do it for sure. I was considering skipping it since we were out of pocket, but DH has a son with a lot of issues, so our doctor highly suggested we get it done. Getting the results honestly made me feel better about things, though I don't know how I would've handled it if I had gotten results that said there could be a problem.

brij2006 · January 2014

I would definitely discuss what your H's view is on this. I didn't care either direction, and when I mentioned it to H he said he didn't want to do it and was very bold about that decision. It was sort of shocking, but he didn't want the looming fear and knew he didn't want to risk m/c if we needed to do amniocentesis.

JLyn821 · January 2014

If you mean the NT Scan, then yes, we did do it. It was just b/w and an u/s. We liked the idea of knowing anything ahead of time and since our insurance covered it, it was a no-brainer for us.

smbenevides1989 · January 2014

We did not do it the first time, and we will not do it again this time. We just go with the idea that nothing would change our mind about our child if he or she was sick.

LuckyAngel07 · January 2014

botanicalbliss said:

Yup, we did all blood work and scans offered to us. Lsquared had a really good explanation of why you would do these things. Maybe you can search for it? The overall reasoning was that if there is something wrong, they might be able to do something to fix it whereas if you wait to catch it at your a/s it might be too late to fix a fixable issue. Also, I would want to know if there was something going on like DS or some kind of defect so I wasn't shocked after delivery.

I'll definitely search to see if I can find anything, but can you explain this further? I know part of it is checking for the possibility of things like Down syndrome or trisomy-18, which obviously no one can do anything about. Part of me would like to know either way, even though I'm really against doing an amnio at the moment should something come back positive.

brij2006 said:

I would definitely discuss what your H's view is on this. I didn't care either direction, and when I mentioned it to H he said he didn't want to do it and was very bold about that decision. It was sort of shocking, but he didn't want the looming fear and knew he didn't want to risk m/c if we needed to do amniocentesis.

I'd already mentioned that early screening tests to DH, and his response was that it wouldn't matter. That is, why do them if it wouldn't matter to us that our child might have Down syndrome? It will be our child no matter what. I understand that way of looking at it, and I feel the same way, but I'm a planner, so I'd want to at least know ahead of time.

ljraff29 · January 2014

My OB didn't offer the NT to us. My office only does it for high risk. There are other 2nd tri tests that he offered that test for the same chromosomal issues. We elected to do these since it was only bloodwork. We'll keep the baby regardless but would like to be prepared. The one I just had done at 13 weeks can tell the sex too with 99% accuracy. The next blood draw will be at my 16 week.

brij2006 · January 2014

LuckyAngel07 said:

brij2006 said:

I would definitely discuss what your H's view is on this. I didn't care either direction, and when I mentioned it to H he said he didn't want to do it and was very bold about that decision. It was sort of shocking, but he didn't want the looming fear and knew he didn't want to risk m/c if we needed to do amniocentesis.

I'd already mentioned that early screening tests to DH, and his response was that it wouldn't matter. That is, why do them if it wouldn't matter to us that our child might have Down syndrome? It will be our child no matter what. I understand that way of looking at it, and I feel the same way, but I'm a planner, so I'd want to at least know ahead of time.

I felt that same way. I'm a planner and don't like "what if's."

We just figured that we knew if it came back positive for anything, we wouldn't get the amniocentesis done. So then we would have 6 more months of wondering and possibly regretting that we didn't get it done.

wiggyslilsis · January 2014

My OB didn't offer the NT scan u/s part of it but they did do the b/w at my 16 week appt. They said it was totally up to me but insurance covered it so we went ahead and did it. I would like to know if there is a chance of anything so that everybody can be prepared.

PandPMeant2B · January 2014

We did it for three reasons:

1. It's non-invasive/easy

2. Insurance covered it

3. We wanted to be as prepared as possible. If something had come up and there was nothing we could do about it at least there'd be no surprises.

Uptowngirl2009 · January 2014

We ended up not doing it. Our doctor didn't really push it because of our age and we had no family history. I did get the quad screen done though and I'm glad we did that. The NT scan is another chance for you to see your baby. Since I didn't have it, I haven't seen LO since 9 weeks.

Meinschatz11 · January 2014

Coming out of lurking, but we did it with our last pregnancy. We would not do an amnio and not terminate, so it was more for us to be prepared. Also, I delivered at a local hospital that has a tiny NICU. If something had shown up on the scan that would have required a higher level of care, I would have planned accordingly to deliver at a hospital with a Level 1 NICU or be closer to our local heart center. Definitely something to consider, because the last thing I wanted was for our son to be lifeflighted to another hospital and me not be able to join him.

LSquared1024 · January 2014

Just my 2 cents...NT is a great non-invasive screening tool that should be offered to patients regardless of age or family history.

There are lots of reason to get it even if you wouldnt terminate. Obviously Trisomy 13 and 18 are considered lethal and would have several abnormal findings on a 20 week ultrasound. Many people say they wouldnt terminate for an abnormality. I think that is probably true for most, but you dont know what you would do until you are there. When faced with the decision some parents are suprised by their own feelings. Will the baby die shortly after birth or possibly during the third trimester? Do you want to have a shower/plan a room/ etc for a baby that wont come home? Some people do want to do these things, some dont. What if your baby will suffer before passing?

Just looking at the case of Down Syndrome. Many say they would love it the same. If that is the case, then give it the opportunity to have the best possible outcome. With a diagnosis there will be extra monitoring (that is necessary for T21 babies) late in the pregnancy, possibly early delivery if the baby begins not coping well with a placenta that also has T21. You will meet the NICU team before delivery. Your family will have time to greive/celebrate/prepare for months ahead of time. You will find a pedi comfortable with special needs children. A daycare provider with appropriate experience. Will you go back to work? Finding something like that out is going to make you sad, at least for a short period of time. Do you want that to be how you spend your childs birth day?

As for amnio risk, there is now a commonly used non invasive blood test that is ALMOST completely diagnostic for T21, but is usually only covered in the presence of abnormal screening.

As for people who say they will just find out at the A/S. 50% of babies with T21 are anatomically normal by ultrasound.

A thickened NT can also be indication for heart defects. I would rather have a heads up going to the A/S that this was a possibility.

There are occasionally "false positives" meaning the NT gives an increased risk and then baby is normal. Yes, that sucks. But a few weeks of your worry is a small price to pay compared to the alternative in my mind.

Thats all I can think of off the top of my head. Its a personal decision, but I very easy one in my mind.

skreedrake · January 2014

We did it, and our results actually came back as elevated risk for Down Syndrome (1:130, I believe). We were able to then do the MaterniT/Harmony test, which is just more blood work, as opposed to the amnio. The blood test was about 95% accurate, whereas the amnio would have been close to 100% accurate, and we were comfortable with that difference. Would that be an option if your results came back elevated?

As an added bonus, we were able to find out her sex with almost (but not quite) 100% accuracy, as opposed to just a very educated guess.

Even if we hadn't been able to do the blood work, I would have chosen to get the tests done, as I wanted to be prepared for anything that could be wrong.

AshleyMatt1215 · January 2014

madeline10L said:
We did not. It basically came down to insurance not covering it and we wouldn't do anything differently if there was an issue.

If insurance did cover it we would have done it.

This

tdmd09 · January 2014

We did it. I was at increased risk for T21 because I lost a baby with T21 before, so I felt it was important to find out the risk for my pregnancy. We would not have necessarily terminated if we found something wrong, but as others have said, it would have helped us to pick an appropriate hospital for delivery, a pediatrician who is familiar with special needs, possibly have specialists available at delivery, etc.

LuckyAngel07 · January 2014

@LSquared - your input is phenomenally helpful and I really appreciate you taking the time to put it all down for me. Because today the nurse was giving me some information to think about, we didn't go into every possibility, but she didn't even mention the extra blood test as an option. It is definitely something I will need to jot down to ask next week after my u/s.

@skeedrake, did your insurance cover the blood test with your increased Down syndrome risk on the initial b/w results?

I'll definitely be getting in touch with my insurance to ask about coverage for the NT scan and related b/w and ask about the extra blood test should we want to/need to pursue further answers. Thank you, ladies, for sharing your knowledge and thoughts on the matter.

I think I always planned to do the NT scan and b/w at first, but now I know more about it and what might follow if any results indicate heightened risk.

LSquared1024 · January 2014

You are very welcome everyone can make their own choice, of course. I just like for people to not make misguided decisions.

brij2006 · January 2014

@lsquared1024 That is a wonderful breakdown and take on it.

skreedrake · January 2014

LuckyAngel07 said:

@skeedrake, did your insurance cover the blood test with your increased Down syndrome risk on the initial b/w results?

@LuckyAngel07 Yes, they did. They would not have covered it if my risk hadn't been elevated, however.

LSquared1024 · January 2014

It is typically covered with elevated risks from other screening.

GoodWolf · January 2014

@LSquared1024 - I always love reading your input. I don't think the NT is covered by my insurance (and I'm almost 14 weeks anyway, which I'm under the impression is too late?), but I'd never had a full explanation of the reasons, process, or indications of the procedure. It's something I'd like to pursue much more in any further pregnancies I may have. And I'm kicking myself for not looking into it early enough in this pregnancy...

R.Wilsonny · January 2014

My next appointment is in 2 weeks and my doctor is going to run some test - probably the same one you are referring to - to check for all of that. I'm going to have it done because I don't think I could go through my pregnancy not knowing if there was something wrong with the baby and if god forbid there was, I could at least mentally prepare myself. I'm 39, so I know the risks are slightly higher for people my age with there being possible genetic issues. So far everything has been going well though, so I'm hopeful that the test results come back without any issues. Reading other responses in this thread has been very helpful because at least I can present some of these questions to my doctor at my next visit

LSquared1024 · January 2014

@goodwolf you may still be in range if you are 14 weeks or less.

LSquared1024 · January 2014

And if not, the Maternal Serum Screen (often called a quad screen) is available 15 weeks to 22 weeks and is a blood test on you. It isn't quite as sensitive, but can still give a good level of screening.

DangerMuffin23 · January 2014

We did because DH has an uncle with downs. It was a unique situation and didn't feel it would affect our baby, but insurance covered it and, I too, am a planner. I would just have wanted to read up more and be prepared.

botanicalbliss · January 2014

botanicalbliss said:

Yup, we did all blood work and scans offered to us. Lsquared had a really good explanation of why you would do these things. Maybe you can search for it? The overall reasoning was that if there is something wrong, they might be able to do something to fix it whereas if you wait to catch it at your a/s it might be too late to fix a fixable issue. Also, I would want to know if there was something going on like DS or some kind of defect so I wasn't shocked after delivery.

@Lsquared1024 - am I talking out of my ass here? I could have sworn you said something along the lines of this last time we got into this issue. I could just be making things up though! Thanks for popping in!

LSquared1024 · January 2014

We did have an abnormal bladder found at an NT that needed a shunt. We did it at 16. If we waited until after an A/S, it would have likely caused permanent damage to the bladder/kidneys. You are not crazy!

LittleLady77 · January 2014

Yes we did it. It was important to us to be prepared and have time to plan no matter what.

Did You/Would You Get the Sequential Screen in 1st Tri?

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