amnio or not? (long + may be distressing to some)

adelaidegal · 03-15-2006, 01:00 PM

Hi. I am supposed to have an early screening test next week, and cannot seem to reach a decision about whether to go ahead with it or not. I know this test throws up false positives, and it's hard to accept the m/c risks of an amnio after the struggle I have been through to get pregnant. Of course I would like the reassurance of the early screening, but am worried it might generate far more stress than reassurance (even if everything turns out OK in the end).

This is such an intensely personal decision, I know. If the results were not good, I don't know if I could terminate the pregnancy, but nor can I feel good about bringing a severely retarded child into the world. I have a second cousin who is quite severely retarded (due to problems during the birth). He is in his 20s now, and he wants the same things any young adult would want (independence, his own apartment etc.), only he will never be able to have them. He will never marry, have normal adult friendships, or have children of his own. He is aware of all that is missing in his life. This seems so deeply painful to me, it makes me question bringing a retarded child into the world.

I understand some people would never terminate a pregnancy, no matter what, and I completely understand and respect this view. As I've always said, I believe every woman should have the choice, but this doesn't mean I could do it myself. But, I also have very strong feelings about the life a retarded child could end up leading, and I can't bear the thought that they may never be truly loved by anyone other than their parents.

I know none of us can guarantee happiness and love for our children, healthy or otherwise, but it seems that enormous suffering is inevitable when a child is retarded. Even if childhood is a relatively happy time, the issues that arise in adulthood are intensely painful and very real. We are already in our early 40s, this will almost certainly be our only child, and if they were seriously retarded I can't help but wonder what would become of them after we are gone? Who would love them in adulthood?

These are questions perhaps not everyone thinks about, I don't know. They are certainly painful to consider, and I would prefer not to have to think about them. But we are all shaped by our own life experiences, and I have seen suffering reach the point where there is no real quality of life. There is no hope for improvement. For some, life is suffering. This is what scares me.

I know retardation is not always so severe, and life is very different for children with less serious problems. I know some people here have children with various problems. Please don't take offense at anything I have written. I wish you and your child every joy in life, and I would hate to upset anyone with my views. But, I feel the need to express them, so I can reach a decision on my own situation. I would appreciate input from anyone who has struggled with the same decision. Thanks.

**BC-GoMom** · 03-15-2006, 02:18 PM

This topic comes up often. I will just give you my opinion based on what you wrote.
I have had a child (my dh's that I adopted and cared for for 16 years) and I have had the chance to have invasive testing 4 different times. I opted out b/c having a handicapped child didn't scare me.... my ds was about as bad off as it could get.

As a physical therapsit who treats peds, I see the kids with disabilities. I see the kids that were diagnosed during pg with tests and u/s and I see kids that were genetically ok but had problems at birth (premie to birth trauma) that would not have been found by teating. Then there are the diagnosis that to date cannot be diagnosed prenatally ( MR and autism, ADHD, ADD). So, MY take on the whole thing is that getting a amnio or CVS will only assure you of certain genetic anomolies (diagnosis) To date it will not assure that you baby will be "perfect" and not have a disability.

About your cousin- his disability was caused at birth you said- his amnio would have been fine. Yes it is extremely hard to raise a child with a disability... but there are positives. Our ds had numerous effects on lots of people during his life.

Only you can decide what is right for you. I do hesitate to remind people that a genetically normal baby does not mean the baby will not have a disability - it is a sobering thought. I would have chosen to do an amnio if there had been anything of concern on the level II u/s, not to abort but to be prepared as needed for the arrival of a special child. Amnio is usually very easy with few complications, but there are complications. If I had had a family history of a chromosomal disorder, then I would have had an amnio

There will be others who write their opinion and I pray they do so you can decide what is right for you.

JUST MY Opinion!
JenC

oldermama · 03-15-2006, 05:15 PM

Hi Adelaidegal:

This is hard one and as you said truly very personal. I will just give you my views and why I choose what I did. (warning long as usual

As you know I have a son with autism (more moderate to severe end) again there is no test for this and I am aware that this baby may have autism but I am praying and hoping and trying to do as much as I can to hopeful not activate the autism and if she does then I know so much more about early treatment and diagnosis ...but I digress.

Anyway, when I was 39/40 I was pregnant and I was admanant that I did not want testing due to the risks. When I had my u/s though I knew from how the dr. reacted - I was sure there was something wrong with the baby (I ended up miscarrying the following week btw) but in those few days I had the thought of having another baby with severe disabilites and I fell apart.

Now I adore and love my son - I do I do but having another child with disabilites - well it was just too much to consider.

So when I fell pregnant with this baby I opted for amnio right away because dh and I decided that we just could not handle a chromosomal abnormality (with also the chance of the child having the dual diagnosis of autism). Also we only have the triple screen blood test not the extra u/s that they offer in the US and England so in my case my tests would come back high due to my age no matter what they said. AlSo in our case -we would have terminated (no judgements from anyone please). I like you mentioned have often wondered and worried how life will be for my son when dh and I are no longer here. I see how the adults like my son are treated and I literally cry. There was a set of a parents here who killed themselves and their adult son because of that fear a few years ago and people were shocked when I said I could relate to how they felt. I didn't say I would do something like - that but I can understand that desperation and that fear of what will happen to your child when you are no longer here to protect them.

I was fearful and tearful up to my amnio but dh was great and said - this is the decision we made and we will deal with whatever. Amnio's these days are really quite safe and they have lots of ways and knows to make sure baby is safe as possible. That said, if you are going for the early tests - you may not need to go for an amnio at all if your odds (which I am sure they will

come back great.

I based my decision on a very personal outcome and due to our family's circumstances - I decided I needed to know and could not go through the remainder of the pregnancy without knowing or being aware. Would I have of for absolute terminated - I still don't know - I had planned on it - but I guess it would have depended on what or how severe they felt the problem was - thankfully I never had to decide on that. I also know that this baby still could have problems but just not the chromosomal problems. I am aware that you can't control everything and I just pray for the best. But in my case I needed to rule out what I could and the amnio did that for me.

I don't envy you the decision - it is tough - moreso I think in your situation.

Good luck in what you decide because whatever it is - I just don't think there is a right answer or wrong one - it's so personal to each family.

Thinking of you.

Barbara

adelaidegal · 03-20-2006, 09:58 AM

Barbara & JenC,

thanks for your very personal and honest responses. I really appreciate the thought that went into them. It is helpful to hear from women who have not only faced this particular issue, but who have also had the experience of loving and raising a severly disabled or autistic child. I do understand that there are no guarantees of a perfectly healthy baby, and that these tests are limited.

Barbara, my heart goes out to you when you say you do wonder and worry how life will be for your son when you and your husband are no longer around. I don't find your response to that tragic story shocking. I think many people don't think deeply about things, they only skim the surface, so they never really grasp the complexities of life. The level of desperation and fear that would lead someone to consider killing themselves and their child is just too much for most people to contemplate. It's so much simpler to pass judgment, to make others "right" or "wrong", than to think deeply about complex issues, and feel compassion for those who face these heartbreaking issues in life.

So anyway, I'm still wavering a little, but I think I will go ahead with the screening tests, and do whatever feels right after that. Thanks so much for the support, and for sharing your personal stories.

BTW, Barbara, you mentioned not having the extra u/s they offer in the US and England, which made me wonder, where you are writing from??

oldermama · 03-21-2006, 10:42 AM

Hi Adelaidegal:

Thank you for your compassionate thoughtful email. Many people don't have the insight or empathy that you have (will make for a good mommy

I will be sending positive thoughts your way for your tests and I just know that everything will be okay.

Thinking of you this week - keep us updated.

I am in Canada btw.

Barbara

CindiR · 03-21-2006, 01:04 PM

I am lurking and want to give my 2 cents. I had an amnio with my first and CVS testing with my second. I agree that it is a very personal decision. My reasoning for having the test is just to have all the information as early as possible. Good luck with your decision.

smiley · 03-22-2006, 09:50 PM

Adding my 2 cents!
I'm not sure how far along you are, so this might be too late...

At approx 12-13 weeks you can have a nuchal fold screening done. This is when they do an in depth u/s, the measure the fold at the back of the baby's neck which gives a good reading on the possibilities of a Downs baby (many older Mom's major worry), they also measure all the limb bones, the head, check the 4 chambers of the heart, check blood flow in the cord and some other stuff I don't remember. My Peri did this with both my sons who were born when I was 40 and almost 43. He knew I'd had a lot of years ttc, alot of m/c's and taking any chance w/an invasive procedure (amnio's and cvs's are invasive) wasn't an option. He even indicated that w/my history my odds of losing the baby because of these tests were higher. He said the nuchal fold test has grown in leaps and bounds in the last few years, and although not totally accurate, it is a really good indicator if additional thoughts of testing would be in order.

I've heard that some women also have a blood test done at the same time...because of my age, my Peri said I would always have results showing a high possibility of problems because they factor in your age! Why take a test that you've failed before they take the blood!?

Anyway...the in depth u/s, if it's not too late, is the way I would go. And then the hope that you have an open and honest Perinatologist!!

++++ thoughts in whatever route you take. It is so very hard, protecting this little one before they are even here!!!!
smiley

adelaidegal · 03-23-2006, 09:33 AM

Thanks Barbara, you are so kind, and always reassuring. That's a special gift. Thanks also CindiR & Smiley. Re: the comment: "I would always have results showing a high possibility of problems because they factor in your age" . . . this is one of the things which bothers me most about this screening test. It seems there must be a lot of "false positives" by my age (42, but turning 43 next month). Smiley, you've made it clear that the "age factor" becomes an issue with the blood test. We planned to discuss this issue (high likelihood of a bad result due to my age) with the OB before undergoing the test, so that is very helpful information. I had assumed the additional blood test was a good thing, as it would provide more detailed information, but now I understand it could also be misleading. This input is really helpful. Thanks!!

smiley · 03-24-2006, 07:33 AM

Hi adelaidegal!

FYI...at my OB's office they automatically had me scheduled for the blood test because of my age. But because of my high risk status and problems I was seeing a Peri all the time too. The OB's office simply said 'oh everyone over 35 gets it.', where my Peri came in and talked to me about it honestly (from his opinion) and indicated that he wouldn't reccommend the bloodtest because it would be positive and that he felt the auto testing w/women over 35 is what leads to the high percentage of false positives on this test. Goodness knows we have enough to worry about!!!

Good luck again!!!!
smiley

oldermama · 03-24-2006, 09:21 AM

Hi Adelaidegal:

I just want to add to what Smiley said - they told me the same thing about the blood test. Due to my age (43) it would actually come back 100% for something wrong. That's why in my case I bypassed it and went right for amnio as I mentioned we don't have the early screening u/s.

Good luck this week - thinking of you. Let us know how it goes.

Barbara

03-15-2006, 01:00 PM	#1 (permalink)
adelaidegal Registered User Join Date: Feb 2006 Location: MA Posts: 30	amnio or not? (long + may be distressing to some) Hi. I am supposed to have an early screening test next week, and cannot seem to reach a decision about whether to go ahead with it or not. I know this test throws up false positives, and it's hard to accept the m/c risks of an amnio after the struggle I have been through to get pregnant. Of course I would like the reassurance of the early screening, but am worried it might generate far more stress than reassurance (even if everything turns out OK in the end). This is such an intensely personal decision, I know. If the results were not good, I don't know if I could terminate the pregnancy, but nor can I feel good about bringing a severely retarded child into the world. I have a second cousin who is quite severely retarded (due to problems during the birth). He is in his 20s now, and he wants the same things any young adult would want (independence, his own apartment etc.), only he will never be able to have them. He will never marry, have normal adult friendships, or have children of his own. He is aware of all that is missing in his life. This seems so deeply painful to me, it makes me question bringing a retarded child into the world. I understand some people would never terminate a pregnancy, no matter what, and I completely understand and respect this view. As I've always said, I believe every woman should have the choice, but this doesn't mean I could do it myself. But, I also have very strong feelings about the life a retarded child could end up leading, and I can't bear the thought that they may never be truly loved by anyone other than their parents. I know none of us can guarantee happiness and love for our children, healthy or otherwise, but it seems that enormous suffering is inevitable when a child is retarded. Even if childhood is a relatively happy time, the issues that arise in adulthood are intensely painful and very real. We are already in our early 40s, this will almost certainly be our only child, and if they were seriously retarded I can't help but wonder what would become of them after we are gone? Who would love them in adulthood? These are questions perhaps not everyone thinks about, I don't know. They are certainly painful to consider, and I would prefer not to have to think about them. But we are all shaped by our own life experiences, and I have seen suffering reach the point where there is no real quality of life. There is no hope for improvement. For some, life is suffering. This is what scares me. I know retardation is not always so severe, and life is very different for children with less serious problems. I know some people here have children with various problems. Please don't take offense at anything I have written. I wish you and your child every joy in life, and I would hate to upset anyone with my views. But, I feel the need to express them, so I can reach a decision on my own situation. I would appreciate input from anyone who has struggled with the same decision. Thanks.

03-15-2006, 02:18 PM	#2 (permalink)
BC-GoMom BC:Preg+35/Gaming/Webkinz Join Date: Jan 2002 Location: Down South Posts: 4,917	This topic comes up often. I will just give you my opinion based on what you wrote. I have had a child (my dh's that I adopted and cared for for 16 years) and I have had the chance to have invasive testing 4 different times. I opted out b/c having a handicapped child didn't scare me.... my ds was about as bad off as it could get. As a physical therapsit who treats peds, I see the kids with disabilities. I see the kids that were diagnosed during pg with tests and u/s and I see kids that were genetically ok but had problems at birth (premie to birth trauma) that would not have been found by teating. Then there are the diagnosis that to date cannot be diagnosed prenatally ( MR and autism, ADHD, ADD). So, MY take on the whole thing is that getting a amnio or CVS will only assure you of certain genetic anomolies (diagnosis) To date it will not assure that you baby will be "perfect" and not have a disability. About your cousin- his disability was caused at birth you said- his amnio would have been fine. Yes it is extremely hard to raise a child with a disability... but there are positives. Our ds had numerous effects on lots of people during his life. Only you can decide what is right for you. I do hesitate to remind people that a genetically normal baby does not mean the baby will not have a disability - it is a sobering thought. I would have chosen to do an amnio if there had been anything of concern on the level II u/s, not to abort but to be prepared as needed for the arrival of a special child. Amnio is usually very easy with few complications, but there are complications. If I had had a family history of a chromosomal disorder, then I would have had an amnio There will be others who write their opinion and I pray they do so you can decide what is right for you. JUST MY Opinion! JenC __________________ Mom of 6: DS - 10 yrs (IVF) DD - 8.5 yrs (IVF) DD - 7 yrs (Natural Surprise) DD/DS twins b/d 12/9/97 @22.5wks IC/PROM/GBS DS- 18.8 years -died Easter Sunday 2005 multiple disabilities since birth Mommy loves you all!

03-21-2006, 01:04 PM	#6 (permalink)
CindiR 1000-4999 post queen of hearts Join Date: Apr 2002 Location: West Michigan Posts: 2,274	I am lurking and want to give my 2 cents. I had an amnio with my first and CVS testing with my second. I agree that it is a very personal decision. My reasoning for having the test is just to have all the information as early as possible. Good luck with your decision. __________________ CindiR ds Sam 6 years (IVF/ICSI) dd Molly 5 years (suprise p/g)

03-22-2006, 09:50 PM	#7 (permalink)
smiley 1000-4999 post queen of hearts Join Date: Jan 2002 Location: West Coast FL Posts: 4,354	Adding my 2 cents! I'm not sure how far along you are, so this might be too late... At approx 12-13 weeks you can have a nuchal fold screening done. This is when they do an in depth u/s, the measure the fold at the back of the baby's neck which gives a good reading on the possibilities of a Downs baby (many older Mom's major worry), they also measure all the limb bones, the head, check the 4 chambers of the heart, check blood flow in the cord and some other stuff I don't remember. My Peri did this with both my sons who were born when I was 40 and almost 43. He knew I'd had a lot of years ttc, alot of m/c's and taking any chance w/an invasive procedure (amnio's and cvs's are invasive) wasn't an option. He even indicated that w/my history my odds of losing the baby because of these tests were higher. He said the nuchal fold test has grown in leaps and bounds in the last few years, and although not totally accurate, it is a really good indicator if additional thoughts of testing would be in order. I've heard that some women also have a blood test done at the same time...because of my age, my Peri said I would always have results showing a high possibility of problems because they factor in your age! Why take a test that you've failed before they take the blood!? Anyway...the in depth u/s, if it's not too late, is the way I would go. And then the hope that you have an open and honest Perinatologist!! ++++ thoughts in whatever route you take. It is so very hard, protecting this little one before they are even here!!!! smiley __________________ dh & I married 9/88, over 20 years!! after 10 yrs ttc/8 ds S b 1/9/02, ds T b 9/17/03 *Nurture creativity as well as the knowledge needed to make it great. Keep the arts in school.*

03-24-2006, 07:33 AM	#9 (permalink)
smiley 1000-4999 post queen of hearts Join Date: Jan 2002 Location: West Coast FL Posts: 4,354	Hi adelaidegal! FYI...at my OB's office they automatically had me scheduled for the blood test because of my age. But because of my high risk status and problems I was seeing a Peri all the time too. The OB's office simply said 'oh everyone over 35 gets it.', where my Peri came in and talked to me about it honestly (from his opinion) and indicated that he wouldn't reccommend the bloodtest because it would be positive and that he felt the auto testing w/women over 35 is what leads to the high percentage of false positives on this test. Goodness knows we have enough to worry about!!! Good luck again!!!! smiley __________________ dh & I married 9/88, over 20 years!! after 10 yrs ttc/8 ds S b 1/9/02, ds T b 9/17/03 *Nurture creativity as well as the knowledge needed to make it great. Keep the arts in school.*

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03-15-2006, 05:15 PM	#3 (permalink)
oldermama Registered User Join Date: Dec 2005 Posts: 1,375	Hi Adelaidegal: This is hard one and as you said truly very personal. I will just give you my views and why I choose what I did. (warning long as usual As you know I have a son with autism (more moderate to severe end) again there is no test for this and I am aware that this baby may have autism but I am praying and hoping and trying to do as much as I can to hopeful not activate the autism and if she does then I know so much more about early treatment and diagnosis ...but I digress. Anyway, when I was 39/40 I was pregnant and I was admanant that I did not want testing due to the risks. When I had my u/s though I knew from how the dr. reacted - I was sure there was something wrong with the baby (I ended up miscarrying the following week btw) but in those few days I had the thought of having another baby with severe disabilites and I fell apart. Now I adore and love my son - I do I do but having another child with disabilites - well it was just too much to consider. So when I fell pregnant with this baby I opted for amnio right away because dh and I decided that we just could not handle a chromosomal abnormality (with also the chance of the child having the dual diagnosis of autism). Also we only have the triple screen blood test not the extra u/s that they offer in the US and England so in my case my tests would come back high due to my age no matter what they said. AlSo in our case -we would have terminated (no judgements from anyone please). I like you mentioned have often wondered and worried how life will be for my son when dh and I are no longer here. I see how the adults like my son are treated and I literally cry. There was a set of a parents here who killed themselves and their adult son because of that fear a few years ago and people were shocked when I said I could relate to how they felt. I didn't say I would do something like - that but I can understand that desperation and that fear of what will happen to your child when you are no longer here to protect them. I was fearful and tearful up to my amnio but dh was great and said - this is the decision we made and we will deal with whatever. Amnio's these days are really quite safe and they have lots of ways and knows to make sure baby is safe as possible. That said, if you are going for the early tests - you may not need to go for an amnio at all if your odds (which I am sure they will come back great. I based my decision on a very personal outcome and due to our family's circumstances - I decided I needed to know and could not go through the remainder of the pregnancy without knowing or being aware. Would I have of for absolute terminated - I still don't know - I had planned on it - but I guess it would have depended on what or how severe they felt the problem was - thankfully I never had to decide on that. I also know that this baby still could have problems but just not the chromosomal problems. I am aware that you can't control everything and I just pray for the best. But in my case I needed to rule out what I could and the amnio did that for me. I don't envy you the decision - it is tough - moreso I think in your situation. Good luck in what you decide because whatever it is - I just don't think there is a right answer or wrong one - it's so personal to each family. Thinking of you. Barbara

03-20-2006, 09:58 AM	#4 (permalink)
adelaidegal Registered User Join Date: Feb 2006 Location: MA Posts: 30	Barbara & JenC, thanks for your very personal and honest responses. I really appreciate the thought that went into them. It is helpful to hear from women who have not only faced this particular issue, but who have also had the experience of loving and raising a severly disabled or autistic child. I do understand that there are no guarantees of a perfectly healthy baby, and that these tests are limited. Barbara, my heart goes out to you when you say you do wonder and worry how life will be for your son when you and your husband are no longer around. I don't find your response to that tragic story shocking. I think many people don't think deeply about things, they only skim the surface, so they never really grasp the complexities of life. The level of desperation and fear that would lead someone to consider killing themselves and their child is just too much for most people to contemplate. It's so much simpler to pass judgment, to make others "right" or "wrong", than to think deeply about complex issues, and feel compassion for those who face these heartbreaking issues in life. So anyway, I'm still wavering a little, but I think I will go ahead with the screening tests, and do whatever feels right after that. Thanks so much for the support, and for sharing your personal stories. BTW, Barbara, you mentioned not having the extra u/s they offer in the US and England, which made me wonder, where you are writing from??

03-21-2006, 10:42 AM	#5 (permalink)
oldermama Registered User Join Date: Dec 2005 Posts: 1,375	Hi Adelaidegal: Thank you for your compassionate thoughtful email. Many people don't have the insight or empathy that you have (will make for a good mommy I will be sending positive thoughts your way for your tests and I just know that everything will be okay. Thinking of you this week - keep us updated. I am in Canada btw. Barbara

03-23-2006, 09:33 AM	#8 (permalink)
adelaidegal Registered User Join Date: Feb 2006 Location: MA Posts: 30	Thanks Barbara, you are so kind, and always reassuring. That's a special gift. Thanks also CindiR & Smiley. Re: the comment: "I would always have results showing a high possibility of problems because they factor in your age" . . . this is one of the things which bothers me most about this screening test. It seems there must be a lot of "false positives" by my age (42, but turning 43 next month). Smiley, you've made it clear that the "age factor" becomes an issue with the blood test. We planned to discuss this issue (high likelihood of a bad result due to my age) with the OB before undergoing the test, so that is very helpful information. I had assumed the additional blood test was a good thing, as it would provide more detailed information, but now I understand it could also be misleading. This input is really helpful. Thanks!!

03-24-2006, 09:21 AM	#10 (permalink)
oldermama Registered User Join Date: Dec 2005 Posts: 1,375	Hi Adelaidegal: I just want to add to what Smiley said - they told me the same thing about the blood test. Due to my age (43) it would actually come back 100% for something wrong. That's why in my case I bypassed it and went right for amnio as I mentioned we don't have the early screening u/s. Good luck this week - thinking of you. Let us know how it goes. Barbara

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