I felt like as soon as I conceived I was a parent to that child. And I felt strongly that just as is the case with my daughter now when she's 2.5, I can't make the best decisions for her without having all the information available. I think when a lot of people feel that they wouldn't terminate the pregnancy if they got bad news, they are only thinking about the possiblity of Down Syndrome. Children with Down Syndrome can live wonderful, happy, fulfilling lives. But the genetic screening screens for other things, including issues that can mean a child would have absolutely zero quality of life. I knew going in to the NT Scan that there were high risks of false positives, but if we got concerning numbers, that would just mean we would push for additional monitoring, and more information finding, until we understood exactly what we were dealing with.
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Knowledge and preparation. I wouldn't want to wait until after birth to scramble for specialist Drs for my LO.
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Same. I wanted all the information possible as soon as possible. And if the test results definitively showed that my LO had a condition that was incompatible with life, I wanted to know about it as early as possible so we could make the best decision for our family.
As you said OP, these tests screen for a lot more than just Down Syndrome. I personally would not carry a baby to term knowing that it was going to have zero quality of life and would die shortly after birth. Fair enough to those who would, but I would not, hence the genetic testing.
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For all the reasons previously stated.
And for the NT scan specifically, I wanted to opt into the opportunity to see my baby via ultrasound. Superficial I know, but that was at least part of why I wanted to do it.
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Ditto to the above. I couldn't go through a pregnancy with a child that wouldn't survive. I don't know what our decision would be about DS, but we at least want to have all of the available information so we can be prepared and make an informed decision.
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To be blunt, termination is something we would seriously consider depending on what the testing revealed. We wanted to be fully informed to make the best decisions possible for our baby and ourselves, even if that decision was termination.
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@autumnlove: same! because if there were issues I would want to prepared - not freaking out at the birth!
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Knowledge is power. And I also think there are certain circumstances in which choosing to terminate a pregnancy is actually sparing an unborn child from pain and suffering...I don't view termination as an evil no matter what.
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@autumnlove: Precisely this. I wouldn't want to be blindsided with anything major and would want to have the proper teams set up ahead of time and educate myself on what we were facing, so we could make an informed decision.
I also had genetic screenings done because I had two miscarriages in a row and had a slew of testing done on myself. Sure, E got caught in the "false positive" trap and I ended up with a CVS, but it was still worth knowing everything was OK. With #2, i still worry about this because we don't have the testing to rely on. A CVS tested for SO MANY THINGS. not just the big four that the blood tests screen for.
Having so many issues staying pregnant raised a lot of questions for us regarding what sort of genetic issues we could be facing....
Also, if i knew the baby was carrying a terminal factor of some kind (even Downs--something like 95% of Downs babies aren't born; it's just THAT common), I would want to prepare for that. After a graphic 12 week miscarriage (I started gushing blood in a Starbucks and was taken by ambulance and my husband was away at military training, so I was alone), I would need to think about the possibility of that happening while i was further along. Plus, some surgeries can be done and corrected in utero.
Sure, most babies are fine. But that small percentage still makes me grateful we have medical advancements at our fingertips. It has less to do with termination than it does with the whole "knowledge is power" mentality.
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Knowledge so we can be prepared.
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More information! I was considered more at risk since I was over 35 for both of my pregnancies. Knowledge is power (to me) and with knowledge I feel more in control and less anxious/stressed.
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@Truth Bombs: exactly this. I'm the kind of person who just needs all information. That's much less stressful to me, because then it's in my control (meaning I then am able to make decisions or preparations). We wouldn't terminate in a DS case but definitely would in an "incompatible with life" case.
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@MamaG: ha ha jinx!
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@Ree723: Agreed.
I know you said genetic testing...but I have had far too many personal experiences with rare and difficult to treat medical conditions in young children and infants to feel comfortable not pursuing prenatal testing overall. The decision of whether or not to terminate a pregnancy affected by a uniformly fatal anomaly (for example Trisomy 13) is very individual. For everything else, however, I favor being aware and prepared, because the knowledge that your child has a congenital heart defect or similar major anatomic abnormality could make a tremendous difference in a practical sense (as in, you would want to deliver that child as close to a children's hospital as possible, to provide for the best possible outcome). Just my 2cents.
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Preparation and/or termination if something showed up that was incompatible with life. I've seen it happen. I have no wish to continue with a pregnancy in that case.
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Ha! I was going to start this thread!
I wanted to be empowered with knowledge of any challenges my child might face. If I found out about Down Syndrome or another disorder, I would want to research and prepare, get into counseling and find the best specialists. A dear friend was blindsided by her daughter's Downs diagnosis and had to struggle with severe depression in addition to a NICU stay and her daughter's needs. I owe it to my child to be the most functional and educated parent I can be, and I don't think putting my fingers in my ears and saying "lalala everything is fine" would help me do that. Diagnosis doesn't have to be about termination. To me it's about empowerment!
Having said that, I also wanted to make sure that we wouldn't have to worry about causing unnecessary pain in a medically futile situation. There are certain things you just don't want your child to have to go through... So if they were going to live a very short tortured life, I was not going to do that to them. My reasons for choosing that route would be exceedingly unusual... But we all know there are some things that are incompatible with life. Medical science can do just enough to keep those kids physiologically functioning at great cost to the child. I don't want to be a part of that.
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Knowledge. If something had been wrong, I would want time to prep myself (DH too) so we could be the most prepared for our child.
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Same as @catomd00.
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I definitely wish I could have had it. I think it's helpful to be prepared even if you wouldn't terminate. My good friend's LO has Downs Syndrome and she didn't know until she was born. Her baby had to be taken to a larger hospital for surgery within hours of being born. My friend definitely wasn't prepared for that. In her case the NT scan didn't show any risks.
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To give us time to decide what do. I don't think we would terminate but there are situations where the baby is suffering and may have to consider it.
Sounds corny but knowledge is power.
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With LO1 we did the NT scan, with LO2 we did the fetal DNA test and NT scan.
I like to be prepared and I wanted to know as much information as possible (especially because the tests we selected are non invasive and carry no risk to the baby). If there was something wrong, I'd want to research support groups, specialists, and have a plan figured out. I wanted to be happy when LO was born, not caught off guard by an unexpected diagnosis.
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Knowledge. Termination is absolutely an option if we got negative genetic results, so we would want to know as soon as possible. @catomd00: this!
ETA that I really don't understand people forgoing this testing because of the risk of false positive--the risk is something like 5%, it's REALLY not that high, so it is still a pretty accurate test. If you wouldn't want to know regardless, that's one thing, but I don't understand not doing it because you don't trust the results.
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@hilsy85: You know, I don't know if it was just my midwife practice or if a lot of OBs/midwives/etc are like this, but I was made to feel like false positives are REALLY common! And then there is the risk to the fetus if you do further testing like an amnio - and that could all be for nothing because what if it was a false positive? In a way, I felt like they used false positives to discourage us from some of the testing.
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@daniellemybelle: according to fetalmedicine.org, the rate of false positive for the Nuchal screenings is 5%. Very low. And even if you did get negative results, a m/c from an amnio is about .5-3% likely--obviously not something you WANT to happen if it was in fact a false positive, but the risks of it are very very very low. I know that my OB never made me feel nervous about any of the testing or the accuracy, so maybe it is practice dependent?
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My cousin and an acquaintance both gave birth to babies with anencephaly- both were healthy women in their 20s. My cousin never recovered and the acquaintance killed herself, which I have a lot of guilt over because she reached out to me since she knew I had some expirence with it and we communicated quite a bit during her pregnancy. (She wanted the baby photographed and I declined and referred her to NILMDTS for someone who has proper training). I knew I could not birth a child that would be incompatible with life.
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Knowledge for sure - there was really no possibility of termination for us, but if there was something genetically abnormal with the baby, we wanted to be able to do the research to find the best care possible for when he was here.
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@daniellemybelle: I would gess that this is much more common in midwife practices than OB practices since midwives are more inclined to discourage additional screenings and/or interventions. But the information @hilsy85: posted is factual and data based, as opposed to just anectodal or opinion based.
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@Truth Bombs: I think that is really it--people hear about an acquaintance or friend having a false positive and think it is SUPER common, when in reality it is not at all. Oh, anecdotal evidence!
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@Truth Bombs: and the false positive rates for the newer screenings are actually around 1% or less.
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@catomd00: exactly this.
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I wanted to know that by baby was healthy. I would have considered terminating if the outcome was bad enough. I dont want to carry a baby that is not going to live. Also, if my baby was going to be completley dependent on people for care their entire, I wouldnt want to have to worry about what was going to happen when my husband and I die.
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Knowledge is power in my opinion. DH and I wanted to be able to make the most informed decisions we could. These tests screen for so much more than Downs and the false positive rates aren't that high. Termination is definitely an option we would have considered if the results had come back poorly (and been confirmed with other testing).
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Because I no longer have the luxury of naivete. As I said on the why not thread, with my first 3 pregnancies I had (or planned to have) no testing done, skipped the NT scan, and considered opting out of all ultrasounds. I definitely had the "nothing bad will happen to ME" attitude. Now, unfortunately, I know better. We had/have ZERO risk factors for anything that's happened. But so far we've beaten the odds (in a bad way) multiple times. Miscarriage after a good ultrasound showing a strong heartbeat and growth on track, 2 unexplained miscarriages in a row, overwhelmingly severe fetal hydrocephalus with no known cause. All of these are very unlikely, especially with no risk factors like a clotting issue on my part or something. And yet.
Because R's issues were not genetic, a genetic screening did not tell us anything about whether this LO would develop a hydro as well. We had to wait for the anatomy scan to find out anything on that. But at this point, just because it's highly unlikely something ELSE will go wrong, doesn't mean it won't. So we had the screening, just to know as much as we could. And for what it's worth, the anatomy scan shows I have an SCH, so yeah, this pregnancy isn't 100% either. Again, it's all unrelated, shit just happens.
I was surprised how hard it was to read the thread on why people opted for no screenings. I know no one meant "I would never terminate ever" as a shot at those of us who have, but it still feels that way somehow. And it makes me sad. That was me, 2 years ago. I really thought I never would (since, as the OP said, I was really just thinking about Downs), and never could have imagined how things really played out. So I'm a bit jealous of those who still have that innocence. And frustrated, since really? You don't know what you'd do, in a situation where it was in your child's best interest to terminate. Absolutist "I would never do that" statements frustrate me a lot.
Also, I wouldn't terminate a baby just for Downs (most likely, there are degrees of severity and I'm not sure how bad it can get), but I also wouldn't want to find out at birth. For the same reason that I chose not to be team green this time, because I didn't want to deal with gender disappointment once my baby was here, I wouldn't want to deal with all the emotions involved with having a special needs child at the same time that I'm trying to welcome that child to the world and get to know and love her. And time to prepare is very good to have, so that you can have resources in place BEFORE you're dealing with a newborn.
Last thought, and I'll wrap up this novel. R's issues wouldn't have shown up on a genetic screening, but it's worth noting that had we not found out that she had a hydro before birth, it would have made things much worse. Had it not gotten as severe as it did, we planned to deliver at 34 weeks so the shunt could be placed as early as possible, to give her brain as much time as we could to develop without the pressure of the fluid. Had we not known till birth, that would have been up to 8 more weeks of the hydro growing, and she would have lost all that potential brain development. Once you miss critical windows in development, it can only go back and make up for it so much. (Which is why, in the end, her situation wound up so dire. It was too late for her brain to bounce back from the amount of damage done.) Also, her head could have gotten very, very oversized, making an attempt at a vaginal delivery much more dangerous. Knowing as much as possible ahead of time allows you to make decisions that you might not even know you need to make, in time for them to make a difference.
Really, my biggest fear with genetic screenings is not the risk of a false positive, but a false negative. I'm far more afraid of believing everything is finally okay, and being wrong, than a little stress over something that turns out to be nothing.
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Pretty much what everyone else is saying. I wanted to be able to make an informed choice based on the best outcome for my baby and my family were there to be anything abnormal. Luckily that was not the case and we are more than likely done having children but if we were to go again I would absolutely get the earliest testing possible like I did this time.
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I felt I had a duty to myself, my husband and to my LO to be armed with as much information as possible, so I could make decisions with a more complete universe of knowledge, rather than less.
Termination was also an option - I don't want to prolong the suffering of a terminal, in pain infant and i believe that termination in those cases is the more compassionate choice - although I don't think whether you would terminate or not really has much to do with genetic screening or testing ; it isn't like you are forced to terminate based on results you get.
The most important reason for me, and us, was to be able to have on hand any medical personnel we might need, based on LO's needs. What if your baby would really benefit from having certain specialists in the hospital at delivery? What if they would benefit from being born in a nicu hospital, instead of a birthing center or home birth? There's such a range of conditions and medical needs between "terminate a pregnancy" and "I'd never terminate so why find out?".
Ultrasounds also happened to discover a heart defect, which otherwise would not have been caught, so I'm a big fan of ultrasounds and testing.
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@daniellemybelle: Also, for what it's worth, a lot of doctors think the risks of amnio aren't as high as the rates would suggest. The women having them done are generally already at a higher risk of miscarrying (since they're more likely to have something wrong with their babies to begin with than average), so it's hard to control for those who would have miscarried anyway regardless of what testing was done.
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Also, (clearly this topic has me a bit worked up) some people are saying the anatomy scan is early enough for them to have time to prepare if something is wrong. Generally, that's true. But if it IS bad enough for termination to be a logical choice (and seriously, never say never. If you haven't been there, you DON'T know), it's a LOT easier to terminate in the first tri than it is later, legally, financially, physically, emotionally, etc. I would always, always choose to know as much as possible, as early as possible. (I mean, really, do you want to be pregnant and attached to the baby for months longer, only to lose it anyway?) My biggest fear isn't losing another baby. It's having to go through another late-term abortion.
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@Torchwood: fwiw, I think it's easy for people to say "I would never terminate". That's of course until they would. There are just so many things out there besides Downs. I think some are unaware of that or don't necessarily know the severity until they are forced into a situation like that...
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Knowledge is power.
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@mrscobee: I agree. I certainly felt that way, even after I became pro-choice. I just didn't realize how much more there was to the issue. I think a big part of it is that the abortion debate is always framed as "mother's right to choose what to do with her own body," versus "baby's right to live." That just totally ignores people who are having them for the sake of the baby, and you practically never hear about them. People are always shocked to hear our story, because they never even thought of something like that happening.
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