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Advice on Amniocentesis
I refused all the early genetic abnormality testing...CVS, NT scan, bloodwork, everything. I knew that no matter what the results were, I was going to keep the baby, and the risk for a miscarriage for CVS for me was just too high, especially given the high false positive rates. I could potentially miscarry a healthy fetus just trying to dig for more information that wouldn't change anything even if I knew it. I'm 34, so my risk is higher than a young girl, but the doc says even that one year will protect me significantly, and neither of us have a family history of genetic abnormalities.
So we're just going to monitor the ultrasounds to see if there are any abnormalities visible and go from there, but now I've got to decide what to do if we do see something abnormal on the screen, though of course we're hoping and praying baby will develop normally. What do you think are the benefits of amnio? Have you gotten one personally and if so, what was it like? Do you think it's worth the risk? I keep thinking about that 1/200 risk for amnio miscarriages, and I just don't know if I want to take the chance. So any information or advice would be helpful.
Keep in mind that no matter what information I get back, I'm carrying this child to term. Both the father and I have moral/religious backgrounds that wouldn't allow us to abort and we're comfortable with whatever life brings us even if it's hard, but beyond that I personally just couldn't do that to my only child. I understand that other women may have different feelings about that and I support them in their decisions, but on a deeply emotional level this child is loved already even if he's not genetically perfect.
So we're just going to monitor the ultrasounds to see if there are any abnormalities visible and go from there, but now I've got to decide what to do if we do see something abnormal on the screen, though of course we're hoping and praying baby will develop normally. What do you think are the benefits of amnio? Have you gotten one personally and if so, what was it like? Do you think it's worth the risk? I keep thinking about that 1/200 risk for amnio miscarriages, and I just don't know if I want to take the chance. So any information or advice would be helpful.
Keep in mind that no matter what information I get back, I'm carrying this child to term. Both the father and I have moral/religious backgrounds that wouldn't allow us to abort and we're comfortable with whatever life brings us even if it's hard, but beyond that I personally just couldn't do that to my only child. I understand that other women may have different feelings about that and I support them in their decisions, but on a deeply emotional level this child is loved already even if he's not genetically perfect.
I liked what adgal said. We definitely plan to monitor for abnormalities, though I hope it doesn't get to the point that we have to do invasive testing. Personally, I like knowing what I'm getting into. Learning about what's going on with the baby gives your family the opportunity to prepare, shop, even arrange for programs and extra care a special needs child might require.
A 1/200 chance with amnio means half of one percent. If you had one, your odds of a successful exam with no complications would be 99.995 to 0.005. It really just depends on whether you feel that small risk is worth it.
A 1/200 chance with amnio means half of one percent. If you had one, your odds of a successful exam with no complications would be 99.995 to 0.005. It really just depends on whether you feel that small risk is worth it.
Please dont if it doesnt matter to u please dont just monitor your ultrasound. i did one every 2 mths.
I dont think I don't think age comes into it anymore I had my 1st wen I was 19 and he passed away at 5 months old
Here is what I would do in your situation....again just me. I wouldn't opt for the early testing because like you the outcome wouldn't have made a difference for me. We didn't have any of the early blood work or anything like that done. But if they did my anatomy scan and found that there was something wrong with the baby I would want to know. Downs to me wouldn't be a difficult choice at all...I don't know if I would have an amnio if my baby was suspected of downs as long as all on the u/s was fine (the baby had all of the parts to survive). Because the life expectancy for a baby with downs is normal...they can have a full life.
If the u/s showed a high likely hood of a lower number trisomy like 18 or 13 I might have the amnio so I could prepare myself. The life expectancy for any of these genetic disorders are very grim. I would absolutely choose to have my baby but I would want to know what to expect and to have time to prepare myself for what life would be like for the baby. I would want to know if I was only going to have a couple of days or weeks with my baby...make arrangements and so forth. I would want to make the best decisions possible for my baby and make sure what time he/she would have would be the best I could give.
So for me it would depend on what the u/s showed any abnormality that showed on the u/s but still has a high life expectancy I probably wouldn't get an amnio, but if it were something where my baby might not survive soon after birth I would want to know for sure so I could grieve before my little one arrived, so once the baby was born I could cherish every moment even more.
Sorry if this is depressing...this is my third pregnancy so I've given it a lot of thought, luckily I have two beautifully healthy little girls and another one on the way and the u/s says she's perfect too. I do think it's wise to be thinking about your decision before hand so your sure of your choices and can stand up for them either way. In my opinion the makings of a GREAT mother! Good Luck and Congrats on you baby!
If the u/s showed a high likely hood of a lower number trisomy like 18 or 13 I might have the amnio so I could prepare myself. The life expectancy for any of these genetic disorders are very grim. I would absolutely choose to have my baby but I would want to know what to expect and to have time to prepare myself for what life would be like for the baby. I would want to know if I was only going to have a couple of days or weeks with my baby...make arrangements and so forth. I would want to make the best decisions possible for my baby and make sure what time he/she would have would be the best I could give.
So for me it would depend on what the u/s showed any abnormality that showed on the u/s but still has a high life expectancy I probably wouldn't get an amnio, but if it were something where my baby might not survive soon after birth I would want to know for sure so I could grieve before my little one arrived, so once the baby was born I could cherish every moment even more.
Sorry if this is depressing...this is my third pregnancy so I've given it a lot of thought, luckily I have two beautifully healthy little girls and another one on the way and the u/s says she's perfect too. I do think it's wise to be thinking about your decision before hand so your sure of your choices and can stand up for them either way. In my opinion the makings of a GREAT mother! Good Luck and Congrats on you baby!
I just delivered my last baby 3 months ago and I had just turned 36. I did have the early blood work test but did not have an anmnio. I refused it. Had the first test come up positive, I probably would have had them redo it and had an amnio only if that test along with an ultrasound, came out looking as though the chances were good for some sort of birth defect. I, like you, would keep my baby no matter what. I just like to be prepared and research all the time. So if I found out that my baby was more than likely to have Downs or some other type of birth defect, I would have researched the heck out of it, only to be prepared for what was to come.
So exciting! And unplanned doesn't mean unwanted. Just a wanted and wonderful surprise! Congrats again.
Again, great advice adgal...and thank you. Little bit wasn't exactly planned but so far I feel nothing but joy. Can't wait to see the little guy/girl. :)
I'm glad hearing my story was helpful to you. One of the things I learned in coming to the decision I did was not to allow anyone...not Dr. or anyone else to push you either way. It is a big decision and one that should only be made after ensuring you are informed. For what it is worth, I think you are doing the right thing in information gathering.
A few other things I learned. I wish Dr.'s would stay away from the term positive or negative. The non invasive testing is never ever conclusive. They use the term positive if your risk factor falls below a certain no (I think it's 1:400) and negative if above that. The reality is it is not conclusive. Unfortunately only invasive testing such as CVS or Amnio. In other words, you could have a "positive" result like mine (1:13) and have a child that is perfectly healthy. You could also have a "negative" result like 1:3000 and have a child with DS. There just is no guarantee. Now, for me, if the result had been 1:3000 or even better then 1:100, I would have opted out.
The pretesting takes many factors into account. The first is age which gives you automatic odds. Then they add in soft markers (shorter femur, absence of nasal bone, thicker NT then average, etc.). Lastly is blood work. The higher the ratio between Papp A and Free Beta, the higher the risk. All of these things are factored in to give you your risk level. So calling the pretesting "positive" or "negative" is just so incredibly misleading. It is simply to determine risk factor, nothing else.
You are right, it is such a complicated issue. And so very very personal. If you trust your Dr. and feel good about her, have a long conversation with her about it. Ask things like who would be doing the procedure, what is there experience, and most importantly, what is that Dr.'s personal risk factor (the Perinatologist that performed mine had a risk level of 1:1600) These things will help you in making your decision.
Again, all the best to you in coming to the conclusion that is best for you! And congrats to you on your little one. So exciting!!
A few other things I learned. I wish Dr.'s would stay away from the term positive or negative. The non invasive testing is never ever conclusive. They use the term positive if your risk factor falls below a certain no (I think it's 1:400) and negative if above that. The reality is it is not conclusive. Unfortunately only invasive testing such as CVS or Amnio. In other words, you could have a "positive" result like mine (1:13) and have a child that is perfectly healthy. You could also have a "negative" result like 1:3000 and have a child with DS. There just is no guarantee. Now, for me, if the result had been 1:3000 or even better then 1:100, I would have opted out.
The pretesting takes many factors into account. The first is age which gives you automatic odds. Then they add in soft markers (shorter femur, absence of nasal bone, thicker NT then average, etc.). Lastly is blood work. The higher the ratio between Papp A and Free Beta, the higher the risk. All of these things are factored in to give you your risk level. So calling the pretesting "positive" or "negative" is just so incredibly misleading. It is simply to determine risk factor, nothing else.
You are right, it is such a complicated issue. And so very very personal. If you trust your Dr. and feel good about her, have a long conversation with her about it. Ask things like who would be doing the procedure, what is there experience, and most importantly, what is that Dr.'s personal risk factor (the Perinatologist that performed mine had a risk level of 1:1600) These things will help you in making your decision.
Again, all the best to you in coming to the conclusion that is best for you! And congrats to you on your little one. So exciting!!
@adgal: Thanks for your advice. I'm actually looking for both sides to the argument so I'm glad you shared your experience. I'm leaning towards no amnio but I like to know that I'm making informed decisions, so it helps to get all of your perspectives on this issue. It is a complicated one.
@1st time mommy: The CVS risk for miscarriage is 1/100...which means 99 women will do it without miscarriage, but that risk was still too high for me to be comfortable with. I mainly refused the blood test/NT which aren't invasive because of the high false positive rate. Even my doc told me when she offered them to me that there are a lot of false positives, and since I wasn't willing to do the CVS procedure, I figured it would make me worry to no end. I was told they factor age into the screening, so that it's nearly impossible for older women to pass it.
Every woman does carry the possibility of abnormalities; most Downs syndrome kids are born to people in their 20s, but mostly because they have more kids. We do all have that risk, but we don't have equal risk. I think if I were 28, my risk would be 1:800, just based on my age. By my age, 34, it's 1:465, and if I had waited until I was 40 to have a baby it would be closer to a 1:40 risk for a child born with Downs. Before I refused the testing, I did a lot of research, you can google it and find some good sources out there.
Every woman does carry the possibility of abnormalities; most Downs syndrome kids are born to people in their 20s, but mostly because they have more kids. We do all have that risk, but we don't have equal risk. I think if I were 28, my risk would be 1:800, just based on my age. By my age, 34, it's 1:465, and if I had waited until I was 40 to have a baby it would be closer to a 1:40 risk for a child born with Downs. Before I refused the testing, I did a lot of research, you can google it and find some good sources out there.
I opted for amnio and have no regrets. I did have NT and that combined with my bloodwork gave me a risk factor of 1:13 for Downs Syndrome. I did a lot of research into amnio, and although the posted rate of risk for amnio is 1:400, the Dr. that did mine was highly highly experienced. After a lengthy conversation, I felt comfortable and went ahead with the procedure. All went well, I had no complications and found out that my son was typical.
I also would not have aborted regardless of the outcome. I did however want to be prepared. It would have been very difficult for me to both accept and deal with had it been a "surprise". I also felt that if he did have DS, I wanted the time before birth to research. For me, information is power and I wanted to know as much as I could about DS, early interventions, etc. There are also extra precautions they can take at birth, and extra preperation that can be put into place.
I am neither pro nor anti amnio. It is a highly personal decision, and there is no right or wrong. The question I believe everyone should ask themselves is why they want the info. Again, no right or wrong answer, but can help you decide if this is a procedure you wish to have.
Just sharing my personal experience and reasons. This is not an attempt in any way to convince you it's the right choice for you. If you have any questions regarding the procedure, please feel free to ask me. Whatever you decide, I wish you well.
I also would not have aborted regardless of the outcome. I did however want to be prepared. It would have been very difficult for me to both accept and deal with had it been a "surprise". I also felt that if he did have DS, I wanted the time before birth to research. For me, information is power and I wanted to know as much as I could about DS, early interventions, etc. There are also extra precautions they can take at birth, and extra preperation that can be put into place.
I am neither pro nor anti amnio. It is a highly personal decision, and there is no right or wrong. The question I believe everyone should ask themselves is why they want the info. Again, no right or wrong answer, but can help you decide if this is a procedure you wish to have.
Just sharing my personal experience and reasons. This is not an attempt in any way to convince you it's the right choice for you. If you have any questions regarding the procedure, please feel free to ask me. Whatever you decide, I wish you well.
All women, regardless of age, are at risk of having a baby with something wrong. It could be minor, it could be severe. Chromosomal issues at birth are the largest contributing factor, but the mother can cause some as well. Alcohol, smoking, drug use, certain medications, etc can all cause birth defects. Genetics can also play a role in it, as some defects are hereditary.
I'm 10 weeks pregnant and about to do the screening on Monday. I'm going to have my baby no matter what. What are the risks?
Some have them because they feel better knowing. I know many women who had an amino and wouldn't abort--they just wanted to be prepared for what the end would bring.
Age is at the end only a number, and a 20 year old is just as much at risk as a 40 year old. I was 20 while pregnant and declined all testing. For me it didn't matter how she came out, I would keep and love her no matter what happened.
Age is at the end only a number, and a 20 year old is just as much at risk as a 40 year old. I was 20 while pregnant and declined all testing. For me it didn't matter how she came out, I would keep and love her no matter what happened.
I think about that sometimes...my grandmother had 9 healthy kids, and at least 3 of them were after she was at least 34. She also worked out in fields, including while pregnant, and would stop and make the whole family lunch by heating up rocks to cook on. While I admit I'm not nearly the tough cookie my grandma was lol, sometimes I wonder if we just worry too much and because we have the options, intervene too much. For me it's essentially a question of whether knowing outweighs the risk to my baby...when I think of it like that, it's hard to be okay with amnio. So I guess I'm just wondering if anybody has any overwhelming arguments why amnio would be a good idea, if you have no plans of aborting.
I am all about natural.... Sometimes people forget that women have birthed the human race for centuries without intervention.
The problem you face is a toughy. Personally, if and only if something dire comes up where the child's life is actually in danger would I agree to an amnio. Remembers, obs know that women don't actually need them to deliver, but they try to feel needed by testing, and probing healthy mothers and babies looking for a way to become the hero of your achievement. Trust yourself and trust God, I'm certain your little one will come here in just the way he was destined too!
The problem you face is a toughy. Personally, if and only if something dire comes up where the child's life is actually in danger would I agree to an amnio. Remembers, obs know that women don't actually need them to deliver, but they try to feel needed by testing, and probing healthy mothers and babies looking for a way to become the hero of your achievement. Trust yourself and trust God, I'm certain your little one will come here in just the way he was destined too!
I'm the same age and have had the same thoughts. I also declined the screenings and figure we'll pass whatever bridge when we reach it. I suppose we could know sooner and stress earlier about possible problems but I think it would be just that for us - we would stress but it would be no big benefit to know before birth and impose risk.
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