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genetic testing - Page 2

post #21 of 66

Wow, I thought this thread had run it's course in early spring, with every possible perspective on the spectrum being represented.  Shiloh, you still sound just as stressed out as you did nearly three months ago when you started this thread.  Actually, more so.  With the tone of your post, my heart just plummeted and I felt so terrible for where your head is at.  I just want to give you hugs grouphug.gif and tell you (yes I know you know this) that all this stress isn't good for you and your baby.  It really isn't, and the power of a positive frame of mind is what you ought to focus on, given that genetic screening is clearly not for you.  Really, TRY to relax and stop thinking about the risks with testing, since you are not going to have them, and if the thought of an anatomy scan stresses you out so much, just skip that too and try your hardest to relax and enjoy the rest of your pregnancy.  I'm afraid you are going to start having nightmares of babies getting poked with amnio needles and all those statistics swimming around in your head making you dizzy.  You're pro-life, you're definitely going to have this baby, you don't feel comfortable with the accuracy of today's genetic screening (and in the end, like you said, feel that any statistical likelihood rate still equates to 'it could happen, or it could not'), so just try to focus your thoughts on what you can do to actually enjoy this pregnancy.  

 

(hope that my soapbox-preach didn't come off terribly and was heard in the spirit of which it was intended, which was simply hoping very badly that Shiloh gets to a peaceful frame of mind and can relax at some point and get past the worries of what abnormal screening results could possibly mean, because my heart hurts for the acute insomnia-inducing stress she is currently in and has been at least on and off for months--she doesn't deserve that!)

post #22 of 66

You know Shiloh I had never really thought heavily about the testing until I started waiting for my own results to come back... but now (on a personal level) I'm starting to feel more and more against the testing.

 

First of all I spent the first part of my wait for results majorly stressed out about it. I hadn't really considered needing to worry about down syndrome, but all the sudden the worry was very real and there seemed like this big risk. One good thing for me about it, is because my mind was constantly on the test I started noticing many people in my life with down syndrome, and realizing it really wasn't a big deal. The college kid who teaches my kids swim lessons has a brother with down syndrome he often brings to the pool with him, a girl in my daughters dance class has a little sister with down syndrome, the fellow who works at the dunkin donuts near us has down syndrome. I had never noticed these people even though I have been in close proximity before because they are normal people! They are just living their lives and yes they happen to have down syndrome and no its not a big deal.

 

After that realization I became so much more relaxed. I also realized knowing the results now (as opposed to when the baby was born) wasn't worth that initial stress.

 

One thing that I think is really sad, is that so many people who do find out early that their baby has down syndrome feel pressured to abort... We have a friend who had been trying for years for a second child. She finally got pregnant and found out her son did indeed have down syndrome. She didn't have any family or support nearby. Her Dr wasn't very supportive. She decided to abort (she didn't share this with anyone until later). I know her, and I know her heart. Had she had that baby she would have been a wonderful mother to him. Another woman I know wanted to keep her baby, but was pressured by her husband. They both regret it.

 

I was reading a poll recently (during my period of stress) and something like 90% of the parents polled felt that having a child with down syndrome enriched their lives. Similarly high statistics for how kids who had a sibling with down syndrome felt.

 

I don't know. I guess I'm just ranting. But having this test made me realize I'm not sure I should be having this test...

 

 

OHHHH and one more story to add. Another friend of ours found out her daughter was going to be born with down syndrome (through the materni21 or harmony). They thought it over and declined any further testing. A few months later they gave birth to a healthy baby boy. Their results had gotten mixed up with another family.


Edited by superbeans - 5/21/13 at 12:16pm
post #23 of 66
Quote:
Originally Posted by YoginiMomma View Post

I'm 24 and although my husband is 42, we both don't have any other genetic/hereditary risk factors that would equal anything but a perfectly healthy baby.

 

I'm in my 20's too. The majority of babies with down syndrome are born to women in their 20's. Although the risk gets higher as you get older, because so many women in their 20's give birth and so few women in their late 30's/early 40s, it throws off the final statistic.

post #24 of 66

It is very sad to think that a woman who wanted to keep her baby would succumb to pressure and have the abortion.  Do people really do that (pressure a woman to have an abortion because of genetic abnormalities?) ?!  I can't imagine a doctor telling a woman to have an abortion, or practically anyone else for that matter.  I also can't imagine anyone's input (beside the father's) having any sway over my decision, ---and anyone who attempted to pressure me about it one way or another would certainly get an attitude back from me to worry about their own reproductive system and get their nose outta my uterus.  

 

Perhaps couples TTC should discuss before pregnancy what their feelings are about under which conditions they would consider abortion and make sure they are on the same page so as to avoid a huge disconnect later on the issue if the results aren't great (or then no testing).

post #25 of 66
Quote:
Originally Posted by Serafina33 View Post

It is very sad to think that a woman who wanted to keep her baby would succumb to pressure and have the abortion.  Do people really do that (pressure a woman to have an abortion because of genetic abnormalities?)

I have never heard of this. I thought the point of genetic testing for women who wanted to keep their babies no matter what was to help them start planning for the right doctors and treatments that will help their child have the best quality of life from day one. I find that to be an amazing benefit of testing, to "hit the ground running".
post #26 of 66
Quote:
Originally Posted by Sphinxy View Post
I have never heard of this. I thought the point of genetic testing for women who wanted to keep their babies no matter what was to help them start planning for the right doctors and treatments that will help their child have the best quality of life from day one. I find that to be an amazing benefit of testing, to "hit the ground running".

 

Well in the US 92% of babies diagnosed with down syndrome before birth are aborted. So for most parents who do the testing its not really to secure the best Drs... its to make sure the mom has time to abort. And you would be shocked the number of people who are planning to keep their babies no matter what but then start singing a different tune once they find out. This was the case with my friend who was pressured by her husband... he even still has a pro life sticker on his car and attends pro life rallies. I am actually pro choice... I just think we are wiping out a group on incredible people by aborting them simply because they would have a lower intelligence and a few other differences. I don't think its necessarily Dr's pressuring people (though I certainly think some do, and I certainly think others don't at all). I think its society in general. We live in this society where everyone wants a perfect kid and a perfect life.

post #27 of 66
superbeans - wow, that statistic is a lot higher than I would have expected. Would you mind sharing your source? When I said I had never heard of this, I meant that I had never heard of doctors pressuring someone. I would find that objectionable and I would not continue working with a doctor who had an agenda in that way. My definition of my own pro-choice stance is to be pro-ALL-choice. My right to choose what is best for me is threatened if a woman who wants to keep her baby is pressured to abort. My right to choose what is best for me is threatened if a woman who wants to decline genetic testing is pressured to get tested. I agree that it would be sad if all kids with DS were being aborted because of a culture of everyone needing to have a perfect life an pefect kid (which I actually think is portrayed in the media as much more prevalent than actually happens - I see a lot of embracing of diversity in the real world today)... But, I have no problem with a couple or a woman independently deciding on their own what is best for them and their child. If I think it is not someone else's place to tell me what tests to have and how to feed my child, etc., then it is not up to me to tell someone else whether it is the right decision for them to abort.
post #28 of 66

I'm one of those who would likely abort in the first trimester if there were genetic abnormalities.  And, I could explain why I feel that way, but the reasons are very personal, specific to my family, and luckily I live somewhere where I wouldn't have to justify it.    

 

I don't think you can make a blanket statement about those who don't feel they could cope with a child with genetic abnormalities as "everyone wants a perfect kid and a perfect life."  

 

I would argue that despite whatever statistics there are, that the vast majority of women who have an abortion, for whatever reason, takes the choice very seriously.  It's just part of being a woman to take whatever is going on inside our womb very seriously, and not make flippant choices as you described.  The implications of having a child who may never reach the point of independence (of the type that we normally think of our adult children having) are complicated and far reaching for the entire family, and it's a decision no woman wants to have to make.  We have to be able to entrust women to be able to handle this decision for themselves and their families during early pregnancy, because there is no other reasonable option (i.e. having the government -or anyone else for that matter- decide for them).  

 

That being said, I am sure that people with downs syndrome can be wonderful, and it's such a special, admirable sort of commitment that a mother makes to care for a special needs child for the rest of her life.  

post #29 of 66

My Dr was actually the one who told me 92%. Now that I'm googling it I'm finding different numbers (I'm sure they don't know the exact number.) Many sources seem to be saying 90% but some are saying as low as 80%. Wikipedia cites three separate studies which concluded the rate in the US as 95%, 98%, and 87%.

 

I think the perfect life culture depends a lot on where you live. I certainly see it in a lot of people around where I live. But being in a large and diverse city I certainly see the opposite as well. From my experience a lot on what socio economic class you fall into plays into this. To be completely honest most of the people we know with down syndrome are from middle to lower socio economic classes. As a general statement I think many of them are more used to accepting differences and are also more used to a struggle, so they aren't as concerned about having a child with differences. All the women I have known personally to abort babies with down syndrome are upper middle class to wealthy. Again (as a stereotype) they are the ones who are more interested and striving for that perfect life and perfect child.

post #30 of 66
Quote:
Originally Posted by Serafina33 View Post

We have to be able to entrust women to be able to handle this decision for themselves and their families during early pregnancy, because there is no other reasonable option (i.e. having the government -or anyone else for that matter- decide for them).

Well said!!
post #31 of 66

I can't figure out how to multi quote and its slowing me down!

 

But I'm curious, where did I describe a flippant choice? And obviously everyone who aborts takes it seriously...

 

ETA: If you are talking about the two women I described I assure you I did not mean it as a flippant choice. Perhaps I didn't make it clear. Both women agonized over it. One dealt with two weeks of her husband refusing to speak with her and threatening divorce and telling her she was a bad mother for considering taking the attention away from the two girls they had by wanting to give birth to a "mongloid". I would never call these situations "flippant choices".


Edited by superbeans - 5/21/13 at 10:39am
post #32 of 66
I'm uncomfortable drawing any connections between birth/abortion choices and economic status in this context. I don't think that can go anywhere positive.

I also don't think it's worthwhile to speculate as to why others made or would make a different choice than one you'd make for yourself. I feel there's judgement there, even if unintended, and we should be careful to respect the range of feelings and beliefs we have in our DDC.
post #33 of 66
Quote:
Originally Posted by Mosaic View Post

I'm uncomfortable drawing any connections between birth/abortion choices and economic status in this context. I don't think that can go anywhere positive.

I also don't think it's worthwhile to speculate as to why others made or would make a different choice than one you'd make for yourself. I feel there's judgement there, even if unintended, and we should be careful to respect the range of feelings and beliefs we have in our DDC.

 

Good. Then don't make them yourself if your not comfortable with it. I'm comfortable with everything I am saying. I have reread it, and although much of it isn't coming out the way its meant to (and a few typos on my autocorrect)... All of it is said from my heart. In fact I'm starting to feel a pregnancy passion and anger over it. Sorry if it offends others. But the fact remains I know some women feel a pressure to abort babies with chromosomal abnormalities (and many choose this decision on their own without outside pressure). I know there are many individual factors in this situation. Family, Dr, support, services, other children, society, the list is endless. I shared a few situations of people I know including some background on their choice and their lifestyle. These are anecdotes and not any kind of statistic or judgement of them or their choices. I shared my own worry and stress over genetic testing. I have also mentioned I am pro choice. But pressuring a person for any reason is not choice. Sorry if these situations bother or offend others.

post #34 of 66
superbeans The story of your friend is so sad. I would say, in a very painful way, she did have a choice. Unfortunately it sounds like the choice was between her marriage and her baby. How completely awful.

I usually come at these discussions from a perspective of wanting to empower women. You are the one who gets to make decisions about your body and your unborn baby. If your doctor is pressuring you to make a choice that you don't agree with, fire your doctor. If your spouse is pressuring you to make a choice that you don't want to, work on better dialogue, get a counselor, or, in the absolute worst case scenario, leave. I'm not saying it's an easy choice by any means, but it is a choice. If I were considering abortion, I would want to hear my spouse's views. I would want us to talk it out together in a productive way. I would hope that we could come to a mutually agreeable decison, but if we couldn't, I would expect the ability to move on from whatever decison was rendered with respect for each other's views. And I don't know that I could stay with someone who was incapable of that.

I think what we can all take away from this is the need for a culture that respects the choices of women, whatever she chooses. Doctors, friends, spouses, the media, etc., can all help a woman gather information, but when anyone is trying to sway a choice in one way or another, I think we have to question their motives and realize that there may be a lack of respect there for the value of our own opinions and decision making. superbeans, this is where I have to disagree with your statement that "pressuring a person for any reason is not a choice." It isn't easy, but we have a choice whether to allow it to affect us. Pressure about what is "best", "moral", etc., is an ever present part of our world today, and it comes from all sides. WE have to take charge of our right to choose and say NO to people who try to pressure us. WE have to decide that our own beliefs, against abortion, in favor of breast-feeding, against circumcision, etc., as important to us as they may be, should never be communicated to another woman in the form of pressure. I think if we can start to reclaim that dialogue by not pressuring others and not giving others the permission to pressure us, we will all benefit.
post #35 of 66
Quote:
Originally Posted by superbeans View Post
 But I'm curious, where did I describe a flippant choice? And obviously everyone who aborts takes it seriously...

 

ETA: If you are talking about the two women I described I assure you I did not mean it as a flippant choice. Perhaps I didn't make it clear. Both women agonized over it. One dealt with two weeks of her husband refusing to speak with her and threatening divorce and telling her she was a bad mother for considering taking the attention away from the two girls they had by wanting to give birth to a "mongloid". I would never call these situations "flippant choices".

no no no I wasn't talking about the two women you described, I was referring to the hypothetical women you referred to choosing abortion in order to strive for a 'perfect life with perfect children.'    

post #36 of 66
Quote:
Originally Posted by Sphinxy View Post
 WE have to take charge of our right to choose and say NO to people who try to pressure us.  

That's what I was trying to say when I mentioned that if anyone tried to influence my choice in such a personal matter they would get a ton of attitude from me...  But, I believe that I am in very good company.  I don't think that it's very common that a psychologically balanced woman who truly doesn't want to have an abortion will be swayed into one, even by her husband (although I can see such a difference in mindsets ending a marriage).  It's not exactly a pleasant or 'routine' kind of procedure nor one you could possibly be in denial about the reality of, before during and after going through one.  You open your body to a ---you know what, you guys what an abortion entails (FYI I've never had one) and I don't need to paint a picture.  I have faith that it's not something that many women can casually do nor would ever do without a ton of soul searching, as the emotional and physical aspects of going through such a procedure must be grueling no matter how right a decision it is for her.  

 

superbeans you know a couple of women who had aborted an unhealthy fetus while simultaneously receiving influence from dr. or husband to do so, and then later regretted it (did they say so to you directly that they wish they hadn't or do you just assume?).  I don't believe it's the entire story to those women's decision making process.   And it doesn't mean that many or most of women who abort a fetus after receiving bad news from their screenings are being pressured into abortions when it isn't what they wanted, those are just anecdotes.  I have faith in the majority of women and their exercising their legal rights over how to manage their uteruses (uteri?).  I just do.  I have faith in womanhood, I guess. 

post #37 of 66

Thank you Sphyinxy, you are a much more eloquent typer than I am! I definitely agree with everything. And wish all women felt empowered to stand by their choices in all regards.

 

Serafina... I guess the phrase perfect life and children was kind of an exaggeration... But in the exaggerated sense both of my friends fall into this category (second one it was more the husband). Although this is a real and true reason for aborting, I still wouldn't consider it a flippant choice. I had more typed out but felt I was divulging too much information about a personal conversation with my friend.

 

In other countries people abort based on gender (and occasionally in the US people do this too), people abort for sickle cell anemia, dwarfism, I've heard people say they wish there was a test for Autism so they could abort, or homosexuality, or any number of things. Some day there probably will be more tests and more things we know ahead of time. 

post #38 of 66
Quote:
Originally Posted by Serafina33 View Post
superbeans you know a couple of women who had aborted an unhealthy fetus while simultaneously receiving influence from dr. or husband to do so, and then later regretted it (did they say so to you directly that they wish they hadn't or do you just assume?).  I don't believe it's the entire story to those women's decision making process.   And it doesn't mean that many or most of women who abort a fetus after receiving bad news from their screenings are being pressured into abortions when it isn't what they wanted, those are just anecdotes.  I have faith in the majority of women and their exercising their legal rights over how to manage their uteruses (uteri?).  I just do.  I have faith in womanhood, I guess. 

 

They both have said so directly. I had started to post exactly what one of them said, but felt it was too personal. I know she wouldn't mind me talking generally about her as we are both on our neighborhood yahoo group and she has shared the experience of the Dr pressuring her with other women considering this Dr, but not sure how she would feel of me posting her exact personal thoughts she shared with me in private. And the one pressured by her husband has also stated her regret many times and has a lot of hatred toward her husband about it. But she's Catholic and doesn't feel she can divorce him. This is what she has said. I'm sure there is much more to her feelings and the fact she has 3 kids with him (they had another after the termination).

 

I'm sure many woman don't have any regrets at all. I'm sure many women have a few regrets, but are mostly glad in their decision. I'm sure its a large spectrum. But because I have two friends who felt pressured, I am also sure there are other women out there who do have regrets.

post #39 of 66
Quote:
Originally Posted by superbeans View Post
  Although this is a real and true reason for aborting, I still wouldn't consider it a flippant choice. 

Ahh, ok, this is where we may disagree.  I definitely would consider striving for "perfection" in ones' life, and aborting a fetus who somehow falls short of that imagined ideal a flippant reason to abort a fetus.  Perfect and 'able to someday live a normal, independent adult life' are very far apart, in my opinion.  

 

Your thoughts on this issue leading towards Eugenics is definitely a controversial one!  :)  There was an interesting podcast recently on Stuff You Should Know on Designer Babies that gives a LOT of food for thought on where things are going in the future of how parents will be able to influence the traits their children have.  Quite terrifying really, but we are already there with the genetic manipulating technology, in some respects.....

post #40 of 66
Quote:
Originally Posted by superbeans View Post
 But she's Catholic and doesn't feel she can divorce him.  

But she could have an abortion?  That's a bit interesting way to follow Catholic doctrine.

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