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Parents' experiences of screening for Down's: How do views change throughout pregnancy?
#2 - Wanted the info - just to know. Merely offered by the doctor with
no pressure either way. It came back 1:10 chance of downs. I was not actually told this number until after the second ratio was available. I had an ultrasound to get better dates and the new results were, IIRC, 1:50 risk. The doctor explained the test, what the results did and did not mean and my options from there (ultrasound vs. amnio vs. nothing). I also did some research on my own. I new I would not terminate no matter what and I knew I wasn't going to do anything risky like an amnio so we decided to have the Level II ultrasound. Baby did not have downs btw. That sounds horrible, I was given the impression that because the results did depend so much on dates that it was pretty much a given that you had a dating ultrasound prior to it. 1 in 10 is low enough to freak most people out, 1 in 50 is lower than normal (depending on your age), but probably not low enough to give too much concern, all for the sake of a quick ultrasound. Cheers Anne |
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Parents' experiences of screening for Down's: How do views change throughout pregnancy?
This is a topic of discussion that comes up rather often here. It is not unusual. I have 2 children. As a matter of principle I don't do screening tests. I know my history, I understand risk and the limitations of screening tests, and if I think the risk is sufficient and the benefit of knowing is sufficient, then I go straight for the full test. With both pregnancies, I met the criteria to be offered screening for Downs, and to be offered amniocentesis. I declined them all (but see below). I had no screening test for Downs with either pregnancy. I thought about it and decided the risk of Downs and other defects was not a reason to terminate, hence not a reason to screen. If there were a problem, there would be signs. And I knew I would have at least one thorough ultrasound. I generally don't feel a need to try to know in advance what will happen...and to me a screening test in any case does not satisfy that need. With the second pregnancy, I eventually did have amniocentesis for full karyotyping. I was pressured into doing the amniocentesis, and I immediately regretted it. The procedure was not performed with as much diligence as I would have wanted. I suffered days of anguish, waiting to see if I would lose the baby as a result. The karyotype was normal. But I expected that. I tend to worry about technical errors. For example, there was a lot of (maternal) blood in the AF, so it is possible the karyotype is mine, not the baby's. The baby is female. With my second baby, a 2nd trimester ultrasound revealed she had a rare (1:40,000) fetal tumor. That kind of tumor often kills the baby in utero, so we had the "do you want to terminate?" conversation. We decided to stay the course. She is now 7 months old, has had major surgery etc., and so far so good, but we will be on guard against a recurrent tumor for some years to come. One reason we decided to stay the course is that I know someone who terminated a pregnancy decades ago and to this day has deeply ambivalent feelings about it. I am actually very glad to have discovered the problem as early as we did. It made for months of anxiety, but also months in which to research, make a plan, and execute the plan. Rare diseases are a special challenge, because health care professionals with relevant experience also are rare. Pologirl |
#13
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Parents' experiences of screening for Down's: How do views change throughout pregnancy?
One other thought. If I have another pregnancy, maybe I will get
karyotyping again. Or maybe not. But I would certainly skip the screening tests. Pologirl |
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Parents' experiences of screening for Down's: How do views change throughout pregnancy?
"Anne Rogers" wrote in message . .. I think you understood the question, I just want to find out about the stuff that would be fatal, that's going to be obvious if it's some kind of physical abnormality, but I'm not sure if the other trisomies would show up on ultrasound, I mean, Downs will often show something up on ultrasound, but not necessarily enough to make a strong connection. I'm not a medic, so I'm not sure exactly how t-13 and 18 present and why that makes them incompatible with life, and therefore whether or not they'd show up on ultrasound, but I think they are something that the triple test is screening for. I guess I'm just going to have to spend sometime getting thoroughly educated, it was easy previously, I wouldn't do anything regardless, so I didn't need to know, but knowing how damaging late pregnancy and delivery was, it just doesn't make sense to carry to full term if the baby isn't going to make it. I asked broad questions and got broad answers so my questions are based on my understanding but may not be right Ultrasound will pick up heart defects etc. Those are medical issues that will sometimes accompany downs but just because the heart condition is there - doesn't mean the baby has downs. I wanted to know about those medical conditions, if present, so I could make better decisions about where to delivery. The ultra-sound will often pick up 'soft markers' for downs. One or two soft markers don't mean much but if you have several soft markers, downs is more likely. It isn't definite though. The only way to definitely diagnose downs prenatally is with an amnio. AFAIK the different trisomies can not be determine by ultrasound. Major organ defects can though. -- Nikki, mama to Hunter 4/99 Luke 4/01 Brock 4/06 Ben 4/06 |
#15
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Parents' experiences of screening for Down's: How do views change throughout pregnancy?
"Anne Rogers" wrote in message That sounds horrible, I was given the impression that because the results did depend so much on dates that it was pretty much a given that you had a dating ultrasound prior to it. 1 in 10 is low enough to freak most people out, 1 in 50 is lower than normal (depending on your age), but probably not low enough to give too much concern, all for the sake of a quick ultrasound. They would not tell me the first number until after the second number was available. I figured it must have been alarming The Level II ultrasound was done by a very good clinic and tech and they gave me yet another set of ratios after factoring everything together and it was very reassuring - somewhere around my age related risk. Even the 1:50 was well below my age related risk. As an aside my doctor wondered if perhaps the high blood pressure I had during that pg affected the test. In hindsight I wonder if that pregnancy may have started out as a twin pregnancy (they give odd ball results too) and maybe one vanished before the ultrasound. I don't know if vanishing twins result in any kind of spotting or what not - never had anything like that. Maybe it was just a fluke -- Nikki, mama to Hunter 4/99 Luke 4/01 Brock 4/06 Ben 4/06 |
#16
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Parents' experiences of screening for Down's: How do views change throughout pregnancy?
"Anne Rogers" wrote in message
. .. I think you understood the question, I just want to find out about the stuff that would be fatal, that's going to be obvious if it's some kind of physical abnormality, but I'm not sure if the other trisomies would show up on ultrasound, I mean, Downs will often show something up on ultrasound, but not necessarily enough to make a strong connection. I'm not a medic, so I'm not sure exactly how t-13 and 18 present and why that makes them incompatible with life, and therefore whether or not they'd show up on ultrasound, but I think they are something that the triple test is screening for. I guess I'm just going to have to spend sometime getting thoroughly educated, it was easy previously, I wouldn't do anything regardless, so I didn't need to know, but knowing how damaging late pregnancy and delivery was, it just doesn't make sense to carry to full term if the baby isn't going to make it. Cheers Anne Okay, gotcha. I don't know the answer to that either -- in terms of various incompatible with life issues, and whether or not they would tend to show up on u/s. In general, some serious issues can show up, but even as serious as they are, they aren't always "cut and dried" fatal. And others may show up but would be inconclusive as to whether it was what specific syndrom or trisomy, and the only for sure way to know would be amnio (or CVS, but you'd be way past CVS time). Potters Syndrom, which is the lack of a liver I think, would be obvious on u/s, and is fatal I believe. It's one of those issues that baby can live in utero, but not outside. There may be a few others like that, where it's obvious that the heart is backwards (and even that is not fatal) or missing chambers, or something. The hardest part about all of the testing issues is that even when they have a definitive diagnosis, such as spina bifida, DS, giant omphalocele (what Nathan had), or brain issues, it's still not always cut and dried on how the child will be affected. It could be very very serious, requiring lots of surgeries to stay alive, and they could die anyway. Or they could have a relatively easily fixable issue. And sometimes you just can't tell for sure which way it's going to go until the baby is born. There are no easy answers, unfortunately. That's why its such a tough issue. -- Jamie Earth Angels: Taylor Marlys -- 01/03/03 Addison Grace -- 09/30/04 Check out the family! -- www.MyFamily.com, User ID: Clarkguest1, Password: Guest Become a member for free - go to Add Member to set up your own User ID and Password |
#17
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Parents' experiences of screening for Down's: How do views change throughout pregnancy?
"Nikki" wrote in message
news:bYadneokqsyV28bbnZ2dnUVZ_jKdnZ2d@prairiewave. com... "Anne Rogers" wrote in message . .. I think you understood the question, I just want to find out about the stuff that would be fatal, that's going to be obvious if it's some kind of physical abnormality, but I'm not sure if the other trisomies would show up on ultrasound, I mean, Downs will often show something up on ultrasound, but not necessarily enough to make a strong connection. I'm not a medic, so I'm not sure exactly how t-13 and 18 present and why that makes them incompatible with life, and therefore whether or not they'd show up on ultrasound, but I think they are something that the triple test is screening for. I guess I'm just going to have to spend sometime getting thoroughly educated, it was easy previously, I wouldn't do anything regardless, so I didn't need to know, but knowing how damaging late pregnancy and delivery was, it just doesn't make sense to carry to full term if the baby isn't going to make it. I asked broad questions and got broad answers so my questions are based on my understanding but may not be right Ultrasound will pick up heart defects etc. Those are medical issues that will sometimes accompany downs but just because the heart condition is there - doesn't mean the baby has downs. I wanted to know about those medical conditions, if present, so I could make better decisions about where to delivery. The ultra-sound will often pick up 'soft markers' for downs. One or two soft markers don't mean much but if you have several soft markers, downs is more likely. It isn't definite though. The only way to definitely diagnose downs prenatally is with an amnio. AFAIK the different trisomies can not be determine by ultrasound. Major organ defects can though. And, a DS baby can have no markers on u/s, soft or hard. Of course it's my belief that if you have a baby with DS that did not show anything on u/s, than odds are that your baby will be mildly affected, at least in terms of some of the immediate issues, like heart problems, digestive and bowel issues, etc. But there are also a lot of issues that are much more likely to come on later in life with a DS person, so even if they seem to be a healthy baby, they can still develop major issues down the line. That's one of the issues for me that's so hard with a diagnosis of DS -- there isn't just one level of DS, there are lots of variations on severity. Most of the DS people you see on TV (not that there are a lot) or in society are VERY high functioning and healthy. But there are also lots that are very very disabled, severely mentally retarded, and with major health issues, but they aren't usually out and about. -- Jamie Earth Angels: Taylor Marlys -- 01/03/03 Addison Grace -- 09/30/04 Check out the family! -- www.MyFamily.com, User ID: Clarkguest1, Password: Guest Become a member for free - go to Add Member to set up your own User ID and Password |
#18
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Parents' experiences of screening for Down's: How do views changethroughout pregnancy?
Jamie Clark wrote:
Okay, gotcha. I don't know the answer to that either -- in terms of various incompatible with life issues, and whether or not they would tend to show up on u/s. In general, some serious issues can show up, but even as serious as they are, they aren't always "cut and dried" fatal. And others may show up but would be inconclusive as to whether it was what specific syndrom or trisomy, and the only for sure way to know would be amnio (or CVS, but you'd be way past CVS time). Potters Syndrom, which is the lack of a liver I think, would be obvious on u/s, and is fatal I believe. It's one of those issues that baby can live in utero, but not outside. There may be a few others like that, where it's obvious that the heart is backwards (and even that is not fatal) or missing chambers, or something. The hardest part about all of the testing issues is that even when they have a definitive diagnosis, such as spina bifida, DS, giant omphalocele (what Nathan had), or brain issues, it's still not always cut and dried on how the child will be affected. It could be very very serious, requiring lots of surgeries to stay alive, and they could die anyway. Or they could have a relatively easily fixable issue. And sometimes you just can't tell for sure which way it's going to go until the baby is born. There are no easy answers, unfortunately. That's why its such a tough issue. Yep. On top of all that, there's no guarantee that even the things that often show up on u/s will, in fact, be detected. Heart defects, for instance, are missed much more often than most people imagine. That doesn't mean that u/s is worthless, but if the goal of u/s is to provide a degree of reassurance, one has to keep in mind that not only is there the question of whether u/s *can* detect particular anomalies, but also the question of *will* it detect an existing anomaly in any particular case. In other words, a clean u/s is reassuring, but not a guarantee. Best wishes, Ericka |
#19
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Parents' experiences of screening for Down's: How do views change throughout pregnancy?
"Pologirl" wrote in message
ups.com... This is a topic of discussion that comes up rather often here. It is not unusual. I have 2 children. As a matter of principle I don't do screening tests. I know my history, I understand risk and the limitations of screening tests, and if I think the risk is sufficient and the benefit of knowing is sufficient, then I go straight for the full test. With both pregnancies, I met the criteria to be offered screening for Downs, and to be offered amniocentesis. I declined them all (but see below). I had no screening test for Downs with either pregnancy. I thought about it and decided the risk of Downs and other defects was not a reason to terminate, hence not a reason to screen. If there were a problem, there would be signs. And I knew I would have at least one thorough ultrasound. I generally don't feel a need to try to know in advance what will happen...and to me a screening test in any case does not satisfy that need. As I wrote in another post, this is not always the case. I have a friend who had a DS baby when she was 28. Because of her age, they didn't offer an amnio. They did a thorough level II u/s and found nothing wrong. So they were shocked and suprised when the baby was born and was diagnosed with DS. Since the baby had no soft or hard markers on the u/s, coincidentally (or not), she has been VERY healthy, and has had very few of the usual health issues that seem to go hand in hand with DS. She did have a slow suck which is typical of DS babies, but even learned to suckle quite well and breastfed for a long while. With the second pregnancy, I eventually did have amniocentesis for full karyotyping. I was pressured into doing the amniocentesis, and I immediately regretted it. The procedure was not performed with as much diligence as I would have wanted. I suffered days of anguish, waiting to see if I would lose the baby as a result. The karyotype was normal. But I expected that. I tend to worry about technical errors. For example, there was a lot of (maternal) blood in the AF, so it is possible the karyotype is mine, not the baby's. The baby is female. With my second baby, a 2nd trimester ultrasound revealed she had a rare (1:40,000) fetal tumor. That kind of tumor often kills the baby in utero, so we had the "do you want to terminate?" conversation. We decided to stay the course. She is now 7 months old, has had major surgery etc., and so far so good, but we will be on guard against a recurrent tumor for some years to come. One reason we decided to stay the course is that I know someone who terminated a pregnancy decades ago and to this day has deeply ambivalent feelings about it. I terminated a pregnancy for fetal anomolies in 1998, so almost 10 years ago. It was the hardest decision that I ever had to make, and although there are till some feelings of sadness and loss, I don't regret my decision. Although, if faced with the same decision tomorrow, I might chose to continue the pregnancy, mostly because there have been great advances in treating giant omphalocele's since we had our diagnosis. But even then, there are no guarantees. Nathan had some addional heart and spine issues, so we didn't know if he would have made it to term, or been strong enought to survive the surgery necessary to fix his defect. I guess one of the benefits of not terminating is that you'll always know for sure how it worked out, even if the baby dies in utero or in the first year, etc. But having chosen terminate, I'll never know if he would have been strong enough or not. All factors pointed to that direction, but sometimes I think it would have been easier if it had been more cut and dried. I am actually very glad to have discovered the problem as early as we did. It made for months of anxiety, but also months in which to research, make a plan, and execute the plan. Rare diseases are a special challenge, because health care professionals with relevant experience also are rare. I'm glad you had the time to prepare and find the right doctors and such. And you are right, having a rare issue makes it hard to find the appropriate care. I'm glad that your daughter is doing well. : ) -- Jamie Earth Angels: Taylor Marlys -- 01/03/03 Addison Grace -- 09/30/04 Check out the family! -- www.MyFamily.com, User ID: Clarkguest1, Password: Guest Become a member for free - go to Add Member to set up your own User ID and Password |
#20
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Parents' experiences of screening for Down's: How do views change throughout pregnancy?
"Jamie Clark" wrote in message ... Of course it's my belief that if you have a baby with DS that did not show anything on u/s, than odds are that your baby will be mildly affected, at least in terms of some of the immediate issues, like heart problems, digestive and bowel issues, etc. That is what my doc said. |
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