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#1 of 16 Old 02-11-2011, 10:14 AM - Thread Starter
 
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Due to a scheduling mishap, my hubs couldn't go with me to the first appointment that my insurance requires for all newly pregnant women.  It's with a nurse who goes over a bunch of stuff, gives you a pile of stuff to take home, and assigns you to your care provider...which won't actually be my care provider :)

 

By letting them take 5 vials of blood from me that day, I saved my midwife some money.  The thing that really had me thinking was the genetic testing for Down syndrome.  At 31, my risk is 1/900.  The test is something like 80% accurate, with a 5% false positive rate.  A positive result means instant amnio, which is about 85% accurate and also has a 5% false positive rate.  I have to call her back to schedule if I decide I want this.

 

My husband, always practical, just shrugged when I told him the various stats.  "That's awful.  Let's just not get it."

 

I knew it would be offered, but I'm still annoyed.  I'm skipping the test, but am I going to be left with this awful little "what if?" until the birth?  It's not like they can change anything, and after wanting this baby for over 5 years and trying for 4 months, termination wouldn't be an option.

 

I just read this, too: http://parenting.blogs.nytimes.com/2010/09/14/deciding-not-to-screen-for-down-syndrome/

 

Any thoughts?


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#2 of 16 Old 02-11-2011, 10:25 AM
 
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Thanks for sharing that article and I really shared the sentiments of the author.  We wouldn't terminate a pregnancy for Down's Syndrom so for us it just doesn't make sense to have the testing done.  Especially with the chance for a false positive, it seems like it would cause unnecessary worry/confusion.   When I was this far along with DD we were living in Germany and had public health care.  The test was option (you had to pay extra for it) and the doctor didn't even ask us if we wanted it.  This time around we're in Brazil and I'm not meeting with my midwife until the second trimester so it won't be an issue. winky.gif For me I figure whatever baby we get is whatever baby this family needs so I try not to stress about it too much and instead enjoy my pregnancy. orngbiggrin.gif On top of that this was a surprise pregnancy for us so I figure our family must really need this kid at this time in particular. 

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#3 of 16 Old 02-11-2011, 12:12 PM
 
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I declined the quad screen last time, and I will decline it again this time, because I don't want to go through the very real chance of a false positive. smile.gif

 

As for nagging doubts or fears: My doubts, fears, and stress are always focused on birth -- I have a super-crappy birthing history. shake.gif So I have never given Down syndrome a second thought, and I'm sure I won't this time either.

 

My experience with pregnancy is that there is a certain amount of ambient anxiety, fear, and etc. Maybe the best thing to do is to feel the fear, acknowledge that it is there, and just be a bit scared. That's ok. That's how I am with birth.

 

I've that found that talking out my fears to others who understand helps a lot. Maybe someone else will have great advice about how to dispel this type of doubt and anxiety. thumb.gif


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#4 of 16 Old 02-11-2011, 02:21 PM
 
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Those statistics do not sound right. If you get a 1/100 chance of the baby having something wrong, they will call it positive. But, then 99% of those people should find their babies fine. "Positive" only is referring to a high screening result, not an actual diagnosis. Then on the amnio, those are over 99% accurate.  http://www.plus-size-pregnancy.org/Prenatal%20Testing/prenataltest-amnios.htm#Accuracy%20of%20AmniocentesisQuote:

 

I just wanted to share this info with you. Good luck with your decisions!

 

 


 

Originally Posted by JlyGrnMigt View Post

Due to a scheduling mishap, my hubs couldn't go with me to the first appointment that my insurance requires for all newly pregnant women.  It's with a nurse who goes over a bunch of stuff, gives you a pile of stuff to take home, and assigns you to your care provider...which won't actually be my care provider :)

 

By letting them take 5 vials of blood from me that day, I saved my midwife some money.  The thing that really had me thinking was the genetic testing for Down syndrome.  At 31, my risk is 1/900.  The test is something like 80% accurate, with a 5% false positive rate.  A positive result means instant amnio, which is about 85% accurate and also has a 5% false positive rate.  I have to call her back to schedule if I decide I want this.

 

My husband, always practical, just shrugged when I told him the various stats.  "That's awful.  Let's just not get it."

 

I knew it would be offered, but I'm still annoyed.  I'm skipping the test, but am I going to be left with this awful little "what if?" until the birth?  It's not like they can change anything, and after wanting this baby for over 5 years and trying for 4 months, termination wouldn't be an option.

 

I just read this, too: http://parenting.blogs.nytimes.com/2010/09/14/deciding-not-to-screen-for-down-syndrome/

 

Any thoughts?



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#5 of 16 Old 02-11-2011, 02:32 PM
 
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Only in my first pregnancy did I ever do many of the tests.  Even then, I still skipped a lot of them like Chorionic Villa Testing, Group B Strep and I've never had ANY testing done in any of my other pregnancies(including u/s), in spite of being with different providers and in different states.  I just waive them all.  As I get older though, probably any future pregnancies (not this one), I MIGHT have an u/s done, but that would be it unless something was obviously needed further for testing.  I'll be 35 by the time this babe is born.  I've learned that often times, the testing and interventions end up causing more stress than helping to prevent what they are designed to be for.


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#6 of 16 Old 02-11-2011, 02:53 PM
 
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 I too only had all those tests done with my 1st pregnancy. That was 20 yrs ago! :p Waaay before I'd laid eyes on the internet or very much information like we have access to today. Anyway, I've declined the Down's test each pregnancy since then. I wouldn't consider terminating my baby if it happened to have Down's Syndrome, so what would be the point of getting the test? I'd rather have my focus be on bonding with this awesome baby throughout my pregnancy and deal with issues like that if necessary later. I see no reason to stress myself out with worry that would keep me from properly bonding with the baby this family was sent, potential health issues & all!


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#7 of 16 Old 02-11-2011, 03:27 PM
 
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I plan to get the NT scan here. Not sure if I will do the amnio regardless though. It will depend.

 

I went on a tour of the children's hospital a few months ago and did you know that they have prenatal surgery now! So, if your child has certain defects, they can treat it prenatally and reduce the effects if not save the life of the baby! SO, if there is a good chance my baby has one of those defects, I would have more testing for early treatment. Plus, I am planning a natural birth far away from the city. SO, if there is anything such as a heart defect or neural tube defect, those plans would have to be changed to increase the baby's chances for life. I would give birth in the city, near a children's hospital (and the children's hospitals have labor and delivery too for serious cases) where he could be treated. I have known a few babies who maybe could have survived, but did not due to not having early diagnosis. The babies were born and then went in to crisis before they found out anything was wrong.

 

Plus, as I have lost a baby to T16 before, and I have had a baby die (2 actually), I would want to know ahead of time if my baby is going to have something devastating wrong where he will never come home. Remember that most of the things diagnosed by amnio are fatal. Of those that are not, early intervention is the key to survival and/or life quality.

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#8 of 16 Old 02-12-2011, 08:16 AM
 
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i'm getting an NT scan and the associated bloodwork because i will be 37 when the baby is born. i'll definitely get an amnio if anything is shown to be abnormal. i'm doing all of this because i will consider terminating if there is a trisomy diagnosis.

i didn't do these things for my first - the quad screen was enough to calm any anxiety i had (i was 34). 


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#9 of 16 Old 02-12-2011, 08:55 AM
 
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DDC from July because I just want to clarify a few things.  For the screening tests (which are for Down Syndrome, T-18, spina bifida, etc.), there is a 5% false positive rate, meaning that 5% of the women who get the test will have a "positive" result.  But most of those with a positive result will not have an affected child.  If you go for the amnio, it is more than 99% conclusive for Down Syndrome, and false positives are extremely rare.  The results are less conclusive for things like spina bifida, but for genetic issues they are very reliable.

 

Also, if you get a positive result on the screening test, they will offer you an amnio, but they will also offer you a level 2 ultrasound.  You can choose to do both or neither or just the ultrasound.  It is your choice.  Some of the things that they might catch in these tests would not change the course of treatment during your pregnancy.  Other things (like spina bifida) might. 

 

HTH.  smile.gif 

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#10 of 16 Old 02-12-2011, 03:48 PM
 
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I declined testing during my last two pregnancies - not because I wouldn't terminate but because I was certain that my babies were healthy. I was wrong last time and I found out at the anatomy scan that that my baby had birth defects (not Downs). I ended the pregnancy. I don't regret declining the test. Finding out a few weeks earlier wouldn't have made much of a difference to me.

So this time we're doing the screenings and the NT scan. It's stressful, it's inconvenient, it's expensive. But I'm also a lot more familiar with the things that can go wrong, that's causing me more stress than the testing is.

And it's not just testing for T21. It tests for other trisomies (some of which are considered fatal) and the 2nd trimester screening tests for neural tube defects.

I'm not really for or against testing. It doesn't really matter to me what someone else does during their pregnancy, but I thought I'd put my thoughts in.


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#11 of 16 Old 02-12-2011, 11:17 PM
 
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Dr. Michel Odent calls this the 'nocebo' effect, because research shows that all the medical prenatal tests we do actually don't improve outcomes for babies (better birth weight, less prematurity etc.) The main effect these test have are to cause worry and stress and to begin the process of medicalizing childbirth, so that before you even start birthing you are training yourself to think of your body as possibly flawed and relying on medical interventions. There are some rare instances where diagnosing a problem before birth can allow the baby to have prenatal surgery, but this is not as common as shows like Private Practice would lead us to believe! Increased worry and stress can also create some of the problems we are trying to prevent (such as low birth weight).

 

The best way to improve outcomes for your baby is to eat a healthy diet (a variety of dark and bright coloured fruits and veggies, whole grains, sea fish such as salmon, salt to taste, limit refined sugars, healthy fats, adequate protein, lots of water) and receive emotional support.

 

My personal perspective with each of my three pregnancies was that if there was nothing that I could change as a result of the tests (and I wasn't prepared to terminate) why do them? And if I supposedly got a positive result saying that my baby had Down's, would I even believe it, due to the chance of a false positive? Then I would spend the whole pregnancy wondering whether my baby had Down's or not--so the tests would not have given me any useful information and only caused me to wonder and worry more than I would without them. I also found I thought more about whether my baby would be handicapped or not before I had my first--after that I really didn't give it much thought with my second and third.

 

My doctor did talk me into doing an ultrasound at 36 weeks, just in case my baby had a rare condition where the organs and the diaphragm don't grow in the right place, and where if the baby was born in a hospital with a NICU and pediatric surgical team he would have a 50% chance of survival if he did have the condition. We did the ultrasound and he was fine. With my second I got no ultrasounds, and I'm very glad I didn't. It is likely that the placenta was growing very close to my cervix (marginal placenta previa) and if I'd known about it I would have worried and there might have been pressure for interventions, and to be in the hospital. I had a safe homebirth with a midwife--if I'd been bleeding or had other worrisome signs then I would have gone to the hospital, but everything was normal. It was only after my daughter was born that my midwife guessed about the marginal placenta previa, and I had a wonderful, non-interventive birth which was totally unaffected by where my placenta was growing. My daughter was born at 37.5 weeks, probably because of the previa which may have caused the placenta to age faster, but she was entirely mature and ready to be born. So my personal experience is that you can trust your body to give you signs if you have a real problem, and medical tests often create problems where otherwise things would be fine.
 

Quote:
Originally Posted by Earthylady View Post

Only in my first pregnancy did I ever do many of the tests.  Even then, I still skipped a lot of them like Chorionic Villa Testing, Group B Strep and I've never had ANY testing done in any of my other pregnancies(including u/s), in spite of being with different providers and in different states.  I just waive them all.  As I get older though, probably any future pregnancies (not this one), I MIGHT have an u/s done, but that would be it unless something was obviously needed further for testing.  I'll be 35 by the time this babe is born.  I've learned that often times, the testing and interventions end up causing more stress than helping to prevent what they are designed to be for.



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#12 of 16 Old 02-14-2011, 05:28 PM
 
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I have to re-read up on all this as I've forgotten it all since I was last pregnant. I did very minimal testing last time and I only remember the midwife telling me the results were fine. She didn't even go into detail. I never worried about it all but I did everything right from preconception on. This time I've done everything wrong as it was an unplanned pregnancy. And I'm older...so I'm nervous and will probably do the testing.

I do think you should only do the tests if you know what you would do if the tests showed x,y,z.

Better start reading up on it!

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#13 of 16 Old 02-15-2011, 02:13 PM
 
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This is pregnancy number 4 for me, and I generally have no problem with minimally invasive tests... if they want a vial of blood I'm ok with that since it doesn't affect the babe.  And I like having as much info as possible... with dd2 the blood work did show elevated risk and my OB suggested a level II ultrasound (similar to a "regular" u/s but they're looking for a much smaller and more specific set of markers).  She wouldn't ok an amnio (which I didn't want anyway) unless the level II u/s showed a problem.  DD2 was fine and I went on to have a vbac.

 

In this pregnancy there is a high risk of birth defects due to a medication I was taking and so I will be getting several ultrasounds to check for anomalies and will, most likely, accept an amnio (my first, and it scares me a bit).  DH and I are on the same page and if the scans/amnio show a severely damaged fetus we won't continue with the pregnancy.

 

I guess, for me, I want as much information as possible as long as that information does not "cost" my babe too much.  Blood tests don't "cost" my babe anything and give me potentially important information... for example, the concern with dd2 was that if she did have a heart anomaly (as the blood test suggested could be the case) then it would be best to give birth in a hospital with a pediatric cardiology team and level III NICU.  But if her heart was fine then there was no reason not to give birth wherever I prefered.  Obviously there are no sure things, but I tend to look at the risk/benefit balance in each individual situation and work my way out from there.

 

Of course, I know people who get every test on the market and people who stay completely away from all external diagnostics so in the end you're the one who has to be comfortable with your choices.  :)


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#14 of 16 Old 02-15-2011, 04:09 PM
 
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I had my second appt yesteday with a new midwife (not really a midwife like I was hoping, and she was retiring in 2 months, unknown to me, and could tell she REALLY didn't want to be there). I had gone to my first appointment alone and had decided against the testing. I didnt want the pressure, stress or have to abort a baby that has a slight possibility of having something wrong. So, this time the midwife confirmed that I declined the testing, and my husband was like "what testing?". Well, my husband decided for me that I was going to get the testing, that I had no choice in the matter. Well, I am near having a panic attack waiting for the results. Apparently, they will not tell you if the results are negative, only if they are positive. So, Im left to stress for an unknown amount of time. Ugh!


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#15 of 16 Old 02-23-2011, 06:32 PM - Thread Starter
 
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Quote:
Originally Posted by activealli View Post
 So, this time the midwife confirmed that I declined the testing, and my husband was like "what testing?". Well, my husband decided for me that I was going to get the testing, that I had no choice in the matter. Well, I am near having a panic attack waiting for the results. Apparently, they will not tell you if the results are negative, only if they are positive. So, Im left to stress for an unknown amount of time. Ugh!


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I'm sorry he wasn't supportive about declining the testing.  I know our partners are often scared and feel helpless, but you deserve to be listened to!


Mom to Thora, born at home 9/28/2011. Currently in Madison, WI, but gearing up for a move to Providence, RI in August! I'd love to meet some folks.
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#16 of 16 Old 02-23-2011, 09:34 PM
 
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Quote:
Originally Posted by activealli View Post

I had my second appt yesteday with a new midwife (not really a midwife like I was hoping, and she was retiring in 2 months, unknown to me, and could tell she REALLY didn't want to be there). I had gone to my first appointment alone and had decided against the testing. I didnt want the pressure, stress or have to abort a baby that has a slight possibility of having something wrong. So, this time the midwife confirmed that I declined the testing, and my husband was like "what testing?". Well, my husband decided for me that I was going to get the testing, that I had no choice in the matter. Well, I am near having a panic attack waiting for the results. Apparently, they will not tell you if the results are negative, only if they are positive. So, Im left to stress for an unknown amount of time. Ugh!


My husband is the opposite but with good reason.  We did all the standard, noninvasive testing with our first.  NT came back high normal, word of advice, never take the NT too seriously, positive or negative doesn't necessarily indicate anything.  I had the 18 week at 21 weeks due to scheduling, the radiologist diagnosed Downs and they scheduled me with the high risk clinic for the following week, without telling me what was wrong.  My midwife told us, then scheduled a new ultrasound with a genetics counselor and a perinatalogist two days later.  They couldn't see what the radiologist saw and recommended against further testing, at 21 weeks it was almost too late to do anything anyways.  So now my husband is freaked for every test and doesn't want any of them.  I would still want to know, to have the choice and be able to prepare for the decision we make.  Plus until today I hadn't heard a hearbeat or seen the baby, so I needed that reassurance that it was in there.

 

I can honestly say that for us we had, and still have, no idea what we would do in that situation until faced with it.  For those two days we sat in each others arms sobbing, took time off work, didn't answer the phone or check e-mail or talk to anyone but our parents and the midwife.  It was the absolute worst hell we have ever been in, and the entire time the baby continued to kick happily.  My only thought was that I didn't want to have to make a decision, I didn't want to end this pregnancy but as a first time mom I didn't think I could handle the potential difficulties, and once that child is out of you the choice to end their suffering, if their condition is severe enough, is no longer yours.  The fear of Downs was still far in the back of my mind until the second he was born, now I look at his face and think there is no way I could have ended that pregnancy.  Yet I still know that unless faced with that decision again, I have no idea which way I would go.

 

My friends little girl was born with a condition called Congenital Diaphramatic Hernia (hopefully I've got that right) CDH.  Babies with this have a 50% chance of making it through the first year, if they do they'll be ok.  She was advised to end it, she chose to fight and give that baby every chance possible.  She ensured the best medical technology was available at the hospital and was prepared.  She and the baby fought for 17 days.  If she hadn't known beforehand, she wouldn't have even had that.  I also knew someone who had GB Strep at the time of birth, her doctor didn't tell her and didn't treat the baby.  The baby wound up deaf for life.

 

I'm not saying that all tests are right for everyone, and everyone should get them, but I am saying that often these test can reveal treatable defects, or illnesses or whatever else, not just the terrible, permanent birth defects like the trisomy abnormalities.  So for me my choice is to know and be able to deal with it as needed.  I won't be doing an amnio or CVS unless one of the other tests reveals something credible that would need to be looked at more closely. 
 

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