Sequential screen, yay or nay?

[TwoBees]

With DD, DH and I decided not to have the sequential screen done. I was 29 years old so my risks were relatively low, we would not be terminating the pregnancy no matter what the results, and we are both worriers, so we didn't want worry to consume us if the results showed higher than normal risk for genetic abnormalities.

This time around, I am 4 years older, although still below the age of 35 threshhold where your risk goes up. DH wants me to skip the sequential screen again for the same reasons as 4 years ago. I'm on the fence this time. WWYD?

[lizzywednesday]

What is it? Maybe my OB practice used a different name for it, but I have never heard of this screening.

Is it the 1st-tri screen a/k/a the nuchal fold test?

[sarahsthreads]

I've skipped all optional testing all three times. I'm 37, apparently ancient to be having a baby, but we wouldn't terminate regardless. I figured that any *major* issues would be picked up on the 20 week u/s and give us time to prepare for things that would need a specialist at delivery or further intervention. (So far, so good, but I need to go back for a followup u/s because DS was completely uncooperative when they were trying to get all the measurements and pictures they needed. More than happy to show off the boy parts, of course!)

I am also a worrier, and if I was told there was an elevated risk of something I'd not be able to let that go and would be stressed for the whole rest of the pregnancy, kwim?

Sarah :)

[TwoBees]

What is it? Maybe my OB practice used a different name for it, but I have never heard of this screening.

Is it the 1st-tri screen a/k/a the nuchal fold test?

Yes, I think so. It's a blood test around 10-11 weeks and then there is another test later on.


I am also a worrier, and if I was told there was an elevated risk of something I'd not be able to let that go and would be stressed for the whole rest of the pregnancy, kwim?


This exactly. This is why we skipped it the first time around. I guess this time, I'm worrying about whether or not I will worry!

[lizzywednesday]

Honestly, you know yourself best and I think, in your case, it's best not to stress yourself out. And, having experienced the anxiety (and DH rage & anxiety issues) involved with an amnio myself, I really wouldn't do it.

I will also point out that you are near one of the USA's absolute TOP children's hospitals - Children's Hospital of Philadelphia - and the docs at the Center for Fetal Diagnosis and Treatment are some of the most compassionate and talented people I have ever had the pleasure to meet.

They are so good that despite the fact that I never want to see any of them again in a medical setting, it's a comfort to know that I could if I had to.

Should there be anything found at your full-anatomy scan in a few weeks, go straight to CFDT and they will take EXCELLENT care of you.

[TwoBees]

Thanks Lizzy, I didn't think of that.

I know the CHOP docs have clinics at my local suburban hospital--I'll have to see if they work with my MFM practice or I have to go to CHOP itself (which itself isn't an issue since I work nearby).

[marymoo86]

Being super ancient, I opted for the Materni 21 test as it is 99% accurate but there is that chance of false positive/negative. I would have been beside myself waiting until the anatomy scan even thought I wouldn't be terminating regardless.

Like PP said, it is just dependent on what you are comfortable doing or waiting.

[wendibird22]

We didn't do screening with DD1 for similar reasons...wouldn't terminate. Just prior to conceiving DD2 very close friends of ours gave birth to a DD with Down Syndrome who only lived 14 weeks. They knew during the pregnancy of the diagnosis and where then able to have other screening done for heart and lung issues. They were transferred to a high risk OB practice and had specialized docs on call at the delivery. They had time, yes to worry, but time also to prepare themselves and family/friends for the delivery and hospitalization. They knew in advance that their DD would require major heart surgery within the first 1-3mo and were able to line up work leave (both WOH), additional childcare for older DD, church support, meals, and all sorts of things before the C section was even scheduled. They educated themselves, talked to their older DD about anticipated health issues with the baby, knew to start looking for daycare options that would accept a child with DS (their DDs daycare would not!), and on and on. Having watched their preparation when we were pregnant with DD2 we decided to do all of the testing knowing that we were planners and big time researchers (my gosh you should see what we go through before even buying an appliance!) and that knowledge would be power for us.

I think it really truly is such a personal decision and there are lots of valid reasons for and against.

[megs4413]

I refuse all screenings for the reasons you mentioned. Both of my kids were diagnosed with issues in-utero at the anatomy scan (DD had swelling in one of the ventricles of her brain; DS was born with cleft lip/palate) and TBH it sort of ruined the rest of their pregnancies for me. Worry, worry, worry. We could have done amnios after the scans (and were advised to) but I'm not comfortable with amnios because of the very small risk of miscarriage. I work too hard to get that far in pregnancy to lose it unnecessarily. So, the diagnoses were just like a dark cloud of concern that overshadowed the rest of pregnancy for me. My DD was born perfectly healthy and never had an issue. Obviously, DS was born with a cleft lip/palate, but it was not part of a global syndrome, so things turned out fine in both cases.

This time, I wish I could tell them just not to tell me anything at the anatomy scan. I'm going in expecting problems, though, so maybe that will help.

[georgiegirl]

I did maternit21 this time. I'm 39.

[scrooks]

We opt for everything offered (bloodwork wise) but it is a lot of worry. I had thr maternity 21 done for the first time with this pregnancy and that eased my mind because I felt it was more accurate that some of the other screening tests.

Honestly... No matter what I didn't relax (actually I am still a little nervous at 30 weeks) until we had detailed anatomy scans at 16 and 20 weeks (we have has issues both major and minor in the past thus the extra 16 week). For me I know I had to do the screenings because an awful surprise at 20 weeks was one of the most horrible things we have gone through but I think for many people the screenings just add extra stress.

Fwiw I am 37.

[trcy]

I am a worrier and a planner. I always want to know what I will be dealing with so I opted for the screening. Like PP said, it is up to you and what will make you feel best. There is no right or wrong.

[Still-in-Shock]

We are using a surrogate, and we did the 1st trimester screening. While there is a special needs child in DH's family, this was more so we could see the ultrasound than anything else. We had seen ultrasounds of the baby's progress early on, but this is a chance to see the baby fully formed for the first time.

Seeing our baby's face took my breath away. Maybe because I had never been able to go this far in a pregnancy before, but it finally sunk in that we really have a baby on the way.

The test also let us know that this baby is pretty big, so I knew that I had to get a bigger carseat!

I completely get not doing an amniocentisis if you have no intention of terminating a pregnancy. And I have grave reservations personally for the chorionic villi sampling (CVS) test. But the 1st trimester screening (blood test and ultrasound combo) is non-invasive. If your insurance covers this, I recommend doing it.

[acmom]

We did all the screens bc my family has a history of spinal cord defects and my DH is a pediatric sub specialist who feels strongly that knowing certain information during the pregnancy can be very helpful for treatment. We knew we would not terminate a pregnancy, but it might have changed where/how delivery happened and what research we did or specialists we got involved. I am also a lot like a PP - a planner who does better when I know what I am dealing with.

[AnnieW625]

We did everything that was offered with DD1. I was 28 at the time. Everything came back clear. I had an u/s at the initial 8 week appt., then one again at 17 weeks, did the AFP bloodwork, and then had another long u/s at 32 weeks to rule out placenta previa. I also somehow ended up getting an u/s at almost every pre natal visit because the machine just happened to be in the room. It was my first pregnancy and added a nice touch!

With baby 2 I had an internal wand u/s at 6 or 7 weeks. The tech said she couldn't see anything more than an egg sack, but that could be normal at the time, some babies grow slower than others she said. A month later the CNM heard the heart beat. At about 15 weeks I went into the CNM and said I couldn't feel the baby move, so she did a quick u/s and we saw the baby. I did the long u/s at 17 weeks, but I passed on the AFP testing. A week later I got a call from the OB saying that I would have an echo cardiogram in three weeks because it looked like the baby had a tiny hole in it's heart, but that was completely normal, so at 21 weeks I had an echo cardiogram. I was told at that time that my baby probably had trisomy-18 (due to having clenched hands, hands are usually opened by _weeks, I can't remember). I had an amnio at 22 weeks. We lost our baby to Trisomy 18 two weeks later at 24 weeks. Besides my great uncle dying a few days after birth around 1919 from an unknown cause, and the same great grandmother delivering miscarried babies at home in the early to mid 1920s (per my mom my grandpa remembered coming home from school when this happened a few times) we had no other special needs children in our families. I was 31 with a 1 in 60,000 chance (I can't really remember that number, it could have been less, but for some reason 60,000 sticks in my mind) of having a baby with a chromosome disorder per the genetic counselor we saw when we knew the baby probably wouldn't be born alive. It was gut wrenching and the worst month of my life and I don't wish what our family went through, but after that I felt very differently about having tests done that were offered in the future (DD1 doesn't remember now, but when she was 3 there were times she would see a photo of a doctor on a poster at our YMCA or be at the doctor and tell me that the doctor made mommy feel all better). I would have taken a baby with any other disorder that could have had a chance at living a happy life in a heartbeat.

With DD2 I had a nuchal fold test at 12 weeks, and did the pre AFP test. Everything came back okay. I then had the long u/s at 18 weeks, and then the AFP test, both of which were fine. I had no other u/s at any other appointments. At first it made me kind of nervous to not have more u/s at my monthly appointment, but eventually I was at ease with just having the heart rate monitor. At 34 weeks the doctor did notice a bit of distress or uneven heartbeat at my appt. so I was sent to L&D so they could monitor the heartbeat and I started having mild contractions so I was given the meds to stop the contractions. Thankfully they worked, and then DD2 ended up staying in until 38 w 6 d. . I was 32 when I had DD2.

Good luck with your choice and I am sure that you will make the one that works best for your family.

[AngB]

With DD, I was very low risk to start out (25, healthy, no family history of anything), but my quad screen bloodwork (the test around 17-18 wks) came back with high AFP levels which can sometimes be an indication of open spina bifida. They sent me for a level II ultrasound and were able to rule out spina bifida from the ultrasound alone. The MFM then said that high AFP levels can be also be a red flag for placenta/growth issues and/or pre-eclampsia. (I don't think they really know why/how, just that it does.) They recommended that I have monthly growth ultrasounds from that point on. (I think I was 18ish wks.) A month later I had a growth ultrasound and DD had severe growth restriction (like almost 3 wks behind), and a week later at 23 wks, I was in the hospital with severe preeclampsia and HELLP syndrome and being told we absolutely had to deliver. So in my case, the quad screen/high AFP levels was very much a "red flag". My case of HELLP/pre-e was atypical and probably would have been missed if they hadn't been extra thorough b/c of the quad screen.

Since I think you have mentioned a history of severe preeclampsia, I would get it. (In my second and third pregnancies, my test results were normal, and I did not have preeclampsia.) There are a lot of stories on the Preeclampsia Foundation forums with stories similar to mine concerning the "positive" quad screen and then early/severe preeclampsia.

[daniele_ut]

My babies were born when I was 30, 31, 35 and just shy of 39. I refused all of the optional tests with all of my pregnancies. I knew I wouldn't terminate for a poor prenatal diagnosis and reasoned that any serious concerns would likely be discovered at my anatomy scan so we could be prepared for them.

[kdeunc]

The first trimester screen(nuchal fold) was an option for me only with DD. Even then I had to travel 1 1/2 hours to have someone perform the test. Her results increased the risk for Down Syndrome to 1 in 46. I was 37 at the time. We opted for an amnio at 16 weeks which came back typical. I was really nervous for the 4-5 weeks before we could do amnio. I was very nervous throughout my pregnancy with her and I am not sure if it was because of the test or because I had miscarried the month prior to conceiving her.

With my boys we did the standard at the time triple screen at 16 weeks or so and the anatomy scan at 20 weeks.

It is a really peronal decision but I would do it again with another pregnancy even with the added stress.

[llama8]

I did all offered tests with DD1 and DD2. I was heavily monitored with DD1 due to a 20 week miscarriage prior (reasons still a mystery) and the fact that she was transverse breech and big.

I was going to worry regardless, so I would rather be prepared and know about any issues. We would not terminate based on any results, but mental and emotional preparation were huge for us if needed. We were lucky that both kids were fine.

[TxCat]

It all depends on what you will do with the information you'll be given by these tests. Will it change your decisions about continuing the pregnancy or preparation for any potential complications? Some people choose to terminate, some choose the option of potential fetal interventional surgeries if that's an option, and some people just want to be prepared for the possibility of extra medical care required after delivery, while still others feel best knowing sort of the bare minimum.

With both pregnancies, we've opted for the greatest degree of testing based on our risk factors at the time. I'll also be the odd man out and admit that we have also been prepared to terminate the pregnancy if there was a finding of a severe anomaly that was incompatible with life or extended life after delivery. I see those terminations and those deliveries a lot and DH and I both knew that we couldn't continue a pregnancy with such a diagnosis. So for us, the more information early on, the better. Now, I find myself in a situation similar to AngB's - elevated AFP with no obvious cause - we've ruled out a neural tube defect as much as possible at this point, so now I'm being monitored as high risk which means extra appointments, NSTs, and growth scans every month. So far so good. It's worrying, yes, but I'm grateful for the extra care at this point because if things start going poorly, hopefully we'll catch it sooner than later, and can still salvage a good outcome.

[westwoodmom04]

It all depends on what you will do with the information you'll be given by these tests. Will it change your decisions about continuing the pregnancy or preparation for any potential complications? Some people choose to terminate, some choose the option of potential fetal interventional surgeries if that's an option, and some people just want to be prepared for the possibility of extra medical care required after delivery, while still others feel best knowing sort of the bare minimum.

.

I've always felt I wouldn't terminate, but my son's test came back with an increased risk for a Trisomy disorder. He ultimately did not have it; but I would have wanted to know if I had a baby that was likely to die stillborn or shortly after birth to prepare myself and my family. And I do think if he did have it, I would have reconsidered whether to continue the pregnancy.

[Still-in-Shock]

Back to the OP's original question. You asked what we would do, and I think you got a whole spectrum of answers. That's because we are all coming from different places with different histories - and different opinions of what we want to know about in advance.

I come from a culture where we don't have a shower for the baby until the baby has arrived, and you can see that it is OK. I also chose not to know the gender for similar reasons.

Is it possible your DH doesn't want any testing because of his upbringing? You mentioned that both of you are worriers. Is it possible that he doesn't want to hear any bad news? If you decide you want the screening, you need to make sure he is ok with that.

[TwoBees]

Back to the OP's original question. You asked what we would do, and I think you got a whole spectrum of answers. That's because we are all coming from different places with different histories - and different opinions of what we want to know about in advance.

I come from a culture where we don't have a shower for the baby until the baby has arrived, and you can see that it is OK. I also chose not to know the gender for similar reasons.

Is it possible your DH doesn't want any testing because of his upbringing? You mentioned that both of you are worriers. Is it possible that he doesn't want to hear any bad news? If you decide you want the screening, you need to make sure he is ok with that.

It was helpful to me to hear all of the different perspectives and reasons. It made me feel justified in our decision that we aren't doing the "wrong" thing. I'm high-risk, so I will already be monitored more closely and have growth ultrasounds at least monthly, and we're having the "standard" genetic testing done based on our ethnic backgrounds (even though we had it done with DD, they wanted it again) so we're already covering some of the spectrum of possible abnormalities.

Still-in-shock, I had not thought about it based on DH's upbringing but yes, that could be part of it. With DD, he was much more adamant and superstitious about not having a baby shower with DD than I was (ended up being a moot point seeing that DD arrived so early).

Thanks to everyone for helping me think through this. I really love you ladies. :hug:

[oneontheway]

I did most of the screenings along with the materni21 test too after a small spot on the heart showed up on the 20 week ultrasound. I would not terminate either but I wanted to be prepared especially with three other little ones at home.

[klwa]

I was about the same age as you for my first two & had the same thoughts with DS. I opted out of all voluntary screening with all three of mine. (I was 29, 32, & 36 at their births.)