Feelings Amniocentesis Results...

[NakedFinger]

Ok so I work with a colleague that is 41 years old, divorced and in a new relationship. She is TTC currently but is very worried with problems at her age (this would be her first child). She is concerned about complications, disabilities etc.

I told her she''ll prob be required to get an Amniocentesis done (told her about it testing the Amniotic Fluid for chromosome abnormalities and such). She said "Oh I will definitely want to have that done. I would have an abortion in a heartbeat".

I was very surprised by her nonchalantness with it, because to be honest there arent many people who flat out say how they would react to a child with disabilities.

So just wondering....will you/did you have an Amniocentesis done, and if so did you/or do you know what you will do if the results come back with problems?

 

[Circe]

I''m having amnio in two weeks at the age of thirty, precisely because I''m so worried about genetic issues. I figure that my role as a parent is to protect my child to the fullest extent of sanity ... and given that there are conditions out there that damn their carriers to lives that are very short and tremendously agonizing, if, all the gods forbid, my child carries one of those conditions, yes, I would terminate. It would be incredibly hard, but I strongly believe that it would be more merciful for my child.

I also know that''s an unpopular opinion, but ... it''s a choice each prospective parent needs to consider. You''re raising an important issue, NF.

 

[Mara]

well there are different types of screenings. she probably won't be 'required' to get an amnio, that is not required by any hospital that i know of, ALL genetic testing is voluntary i believe. some people don't want any testing because they flat out don't care...they plan to keep the child regardless of what happens.

there are 'pre-screenings' that can be done that are non-invasive that can tell you a good chance of RISK of the child having defects.
from that point you can decide to do amnio if you want to know for sure (Since they take fluid).

for us personally, we are not sure about what we would have done. i would definitely have the pre-screenings done and then assess the risk from there (aka it will come back and be something like 1 in 10,000 or something like 1 in 5,000). if it turned out our risk was very high and/or we were very afraid of something being wrong, we would definitely have an amnio. the risk of an amnio is only 1 out of 200-400 (depending on what stat you look at and what date you are), which is not very high...but yes some people would not want to risk that esp if you have been TTC for a while. on the other hand, some people just know what their capabilities and feelings about defects are, and i don't think there is anything wrong with her knowing up front what they do NOT want to have happen, it is within their choice. honestly i don't know if we'd want to have a child with serious defects. i don't think it's fair to the child or to us or anyone else who would have to help us in that situation.

 

[E B]

Date: 7/24/2009 2:29:57 PM
Author:NakedFinger

So just wondering....will you/did you have an Amniocentesis done, and if so did you/or do you know what you will do if the results come back with problems?

With my son, we didn't have it done because his NT scan numbers and my blood work all came back normal (that, and I'm not of 'advanced maternal age'). If my doctor suspected a serious issue with a subsequent pregnancy, however, we'd probably choose to have an amnio done.

What my husband and I would choose to do *after* would depend on the problem/abnormality, really.

 

[TravelingGal]

Mara is right, no one is required to have any genetic testing. It just is encourage when you are over 34 or have a history of anything in the family.

I had the amnio done after the screening, which came back with excellent odds. I don''t think the docs understood why I wanted the amnio, but I needed to know diagnostically the baby was fine - especially since she was practically an "oops."

I''m not sure what I would have done had the results come back positive for something. I probably would have researched the hell out of it and then made a decision with TGuy. We did not want to bring in a special needs child into this world. I don''t think anyone really wants that for their first choice.

If I were to get pregnant again, I would go through the amnio once more. If something was wrong, I''d be more inclined to terminate this time, I think (although I haven''t thought it through too much). It is hard enough raising healthy children and Amelia takes a lot out of me. I don''t know if I would want subject her to a sibling that would take a lot of help and understanding. It is a big burden on a child.

I''ve read a lot about down syndrome, so it would be hard for me to make a decision if that what the results came back as. I believe down''s children are so sweet and loving and many live healthy happy lives. However for some of the other trisomies where babies die terrible, painful deaths, I would terminate.

 

[lucyandroger]

What a tough question, NF - one that a lot of couples unfortuately don''t discuss until they''re confronted with it.

My SO believes that life begins at conception. While I''m more iffy on where that line is, I chose him as my partner and respect his views on the situation. Therefore, we will not be having kids anywhere near 35 to reduce the risk of a defect. And we would skip the amniocentesis b/c abortion would not be an option.

As Mara pointed out, the results of the amnio are not exact - they tell you there''s a good risk of there being a defect. A family friend and her husband were told that their baby had a risk of a defect and they made the decision to keep the baby. Well, the baby was born perfectly healthy. Now the fact that they were considering aborting their perfectly healthy baby makes my friend sick to her stomach.

 

[Tacori E-ring]

Date: 7/24/2009 2:29:57 PM
Author:NakedFinger

I told her she''ll prob be required to get an Amniocentesis done (told her about it testing the Amniotic Fluid for chromosome abnormalities and such). She said ''Oh I will definitely want to have that done. I would have an abortion in a heartbeat''.


I was very surprised by her nonchalantness with it, because to be honest there arent many people who flat out say how they would react to a child with disabilities.

I just wanted to touch on this. I have no personal experience with this but one of my close friends had to deliver/abort her 20 week old daughter b/c of severe genetic complications. I assure you it is NOT an easy decision. People often "act" like it would be or put on a brave front but if it comes to that I hope you will be a sensitive and supportive friend to her. Just try to keep an open mind. I have my fingers crossed that this decision with be unnecessary and she will have a healthy child.

 

[nycbkgirl]

Here was my situation:

I was 27 when pg and I had great NT results so based upon that and doc telling me it was really unnecessary I opted out. Then one of my twins had an ecogenic focus in the heart and one of the risk factors is downs but they have to tell u that even tho most of the time its nothing but Hello...I was goin nuts bc that meant there was still a possibility...I was left wondering y didn''t my ob didn''t warn me that there were still ways to diagnose downs later down the line? Would I have opted for an amnio then?....I may have. I was left worried and scared and hysterical for the rest of my pregnancy. I cried almost everyday. Even tho the doc said it is 99,9% nothing I still had that fear. I did have a choice to do the amnio then but didn''t bc at this late stage I was scared of that too esp with twins. Everythin did turn out great and it was wonderful but I didn''t get to enjoy my pregnancy...there goes the debate of whether docs really have to warn u of this even when they really do know that''s its nothing...

But I would terminate if there were problems...and it really doesn''t surprise me when ppl don''t even think twice about their decision bc u could be bringing a child into this world to suffer ...granted lots of kids with downs aren''t suffering and are great kids...its just not for everyone.

 

[Mara]

Date: 7/24/2009 3:10:12 PM
Author: lucyandroger

As Mara pointed out, the results of the amnio are not exact - they tell you there's a good risk of there being a defect. A family friend and her husband were told that their baby had a risk of a defect and they made the decision to keep the baby. Well, the baby was born perfectly healthy. Now the fact that they were considering aborting their perfectly healthy baby makes my friend sick to her stomach.

I just wanted to clarify. The results of the amnio are 99.9% accurate. They take fluid directly from the uterus so the testing is very close to 100%. For legal reasons they can never say 100% but it's something like 99.9%.

The 'screening' tests that are done before an amnio are only RISK assessments. These are what can mostly just freak people out with 'maybes'. Aka they will tell you 'you have a 1 in 10,000 chance of having a baby born with XYZ'. Some people aren't comfortable with the risk assessment and want to know for sure. Others feel ok the chance is very tiny and we will take the chance.

It is interesting how much your risks for defects increase after the age of 30. I always thought 35 was like some magical cutoff but I saw a chart recently and after 30 it actually goes up a fair amt each year. After 40 it is definitely more risky for certain defects, aka something like 1 in 200 instead of 1 in 500 or 1000.

Tacori, I can't even imagine having to think about that option at 5 months. Your poor pal.

 

[lucyandroger]

Date: 7/24/2009 3:22:52 PM
Author: Mara

Date: 7/24/2009 3:10:12 PM
Author: lucyandroger

As Mara pointed out, the results of the amnio are not exact - they tell you there''s a good risk of there being a defect. A family friend and her husband were told that their baby had a risk of a defect and they made the decision to keep the baby. Well, the baby was born perfectly healthy. Now the fact that they were considering aborting their perfectly healthy baby makes my friend sick to her stomach.

I just wanted to clarify. The results of the amnio are 99.9% accurate. They take fluid directly from the uterus so the testing is very close to 100%. For legal reasons they can never say 100% but it''s something like 99.9%.

The ''screening'' tests that are done before an amnio are only RISK assessments. These are what can mostly just freak people out with ''maybes''. Aka they will tell you ''you have a 1 in 10,000 chance of having a baby born with XYZ''. Some people aren''t comfortable with the risk assessment and want to know for sure. Others feel ok the chance is very tiny and we will take the chance.

It is interesting how much your risks for defects increase after the age of 30. I always thought 35 was like some magical cutoff but I saw a chart recently and after 30 it actually goes up a fair amt each year. After 40 it is definitely more risky for certain defects, aka something like 1 in 200 instead of 1 in 500 or 1000.

Tacori, I can''t even imagine having to think about that option at 5 months. Your poor pal.

Oh, hmmm...that''s for the clarification, Mara. I wonder if my friend only had the risk assessment then. I would check with her but better not to open up an old wound. Maybe my mom knows...

 

[E B]

Date: 7/24/2009 3:18:35 PM
Author: Tacori E-ring

I just wanted to touch on this. I have no personal experience with this but one of my close friends had to deliver/abort her 20 week old daughter b/c of severe genetic complications. I assure you it is NOT an easy decision. People often ''act'' like it would be or put on a brave front but if it comes to that I hope you will be a sensitive and supportive friend to her. Just try to keep an open mind. I have my fingers crossed that this decision with be unnecessary and she will have a healthy child.

Well said, Tacori. I''m so sorry your friend had to make such a difficult decision.

 

[Circe]

Date: 7/24/2009 3:10:12 PM
Author: lucyandroger

As Mara pointed out, the results of the amnio are not exact - they tell you there's a good risk of there being a defect. A family friend and her husband were told that their baby had a risk of a defect and they made the decision to keep the baby. Well, the baby was born perfectly healthy. Now the fact that they were considering aborting their perfectly healthy baby makes my friend sick to her stomach.

Er ... not to be argumentative, but could your friend maybe have had a nuchal translucency test/quad screen? Those are 85% to 95% accurate, which does leave you with some margin for error. The amnio is supposedly 99.4% accurate, which is pretty high. The bigger issue with amnio is that it can cause miscarriage in what's commonly estimated at 1 out of 200 or 1 out of 400 cases (though my doctor told me that was a *very* high estimation - according to her, these days, it's closer to 1 in 1000).

ETA: Looks like we all cross-posted - sorry, ladies! And, Tacori, so very, very sorry for your friend and what she went through.

 

[lucyandroger]

Date: 7/24/2009 3:32:33 PM
Author: Circe

Date: 7/24/2009 3:10:12 PM
Author: lucyandroger

As Mara pointed out, the results of the amnio are not exact - they tell you there''s a good risk of there being a defect. A family friend and her husband were told that their baby had a risk of a defect and they made the decision to keep the baby. Well, the baby was born perfectly healthy. Now the fact that they were considering aborting their perfectly healthy baby makes my friend sick to her stomach.

Er ... not to be argumentative, but could your friend maybe have had a nuchal translucency test/quad screen? Those are 85% to 95% accurate, which does leave you with some margin for error. The amnio is supposedly 99.4% accurate, which is pretty high. The bigger issue with amnio is that it can cause miscarriage in what''s commonly estimated at 1 out of 200 or 1 out of 400 cases (though my doctor told me that was a *very* high estimation - according to her, these days, it''s closer to 1 in 1000).

Could be that that''s what she had. Sorry..didn''t mean to spread false info. I''m going to try to find out which test she had without asking her directly. As you might imagine, that is sore point for them.

 

[Tacori E-ring]

Date: 7/24/2009 3:30:25 PM
Author: EBree

Date: 7/24/2009 3:18:35 PM

Author: Tacori E-ring


I just wanted to touch on this. I have no personal experience with this but one of my close friends had to deliver/abort her 20 week old daughter b/c of severe genetic complications. I assure you it is NOT an easy decision. People often ''act'' like it would be or put on a brave front but if it comes to that I hope you will be a sensitive and supportive friend to her. Just try to keep an open mind. I have my fingers crossed that this decision with be unnecessary and she will have a healthy child.

Well said, Tacori. I''m so sorry your friend had to make such a difficult decision.

Thank you Circe, Mara and Ebree. It was difficult for her and her DH but her baby would have lived a very short and very painful life. I do think things happen for a reason b/c less than two months after she delivered her little girl she got pregnant with her twin sons. I KNOW that helped heal her heart.

 

[princesss]

I have no idea what I would do. I think it depends on when each couple believes life begins, and what kind of life the child would have. I''m not inclined to consider it unless it was something that would put my child through a lot of pain, and/or dramatically decrease life expectancy. That said, I would do an amnio if I was at high risk for something so that my partner and I could make an informed choice.

 

[NakedFinger]

Date: 7/24/2009 2:41:04 PM
Author: Circe
I'm having amnio in two weeks at the age of thirty, precisely because I'm so worried about genetic issues. I figure that my role as a parent is to protect my child to the fullest extent of sanity ... and given that there are conditions out there that damn their carriers to lives that are very short and tremendously agonizing, if, all the gods forbid, my child carries one of those conditions, yes, I would terminate. It would be incredibly hard, but I strongly believe that it would be more merciful for my child.

I also know that's an unpopular opinion, but ... it's a choice each prospective parent needs to consider. You're raising an important issue, NF.

Circe- Thank you for your well thought out and honest post. I agree very much with your feelings towards this which are similar reasons to why I feel I would consider that option as well. Not because of social stigmas or not wanting to "deal" with it, but more because I would hate to see my child suffer through life. Its the same concept to why families and doctors "pull the plug" on suffering patients, or put a dog you love and cherish to sleep because their quality of life isnt there anymore, I guess if I knew early enough to prevent it I feel I would want to "be more merciful to my child" as you perfectly put it.

Mara & TGAL- you are correct. Sorry I thought I read that a woman over 35 has to have it, but you are correct, no one is forced to.

Ebree- Yes, I think a lot would depend on what the problem was.

Tacori- Yes I definitely have an open mind on this, and actually dont disagree wit her feeling on it (I actually feel I might consider that as well if I was God forbid presented with the decision). I support either decision, and definitely feel its a decsion for the parents' and the parents alone. I was just surprised by how blaze she was in her response, because most people are so "PC" nowadays, I was surprised she had no qualms about saying it right to my face.

Lucy- Agreed that many couples dont discuss this in advance. We have discussed all options ahead of time, this test, birth method, breast feeding, etc etc already and we arent even pregnant yet! I guess I just like to be prepared for as much as possible, and liked to see how others would feel about this as it is definitely a thought provoking question

To all ladies- Thank you for your honesty and responses. And Tacori I am sorry to hear your friend was faced with this decision, but it seems she made one that was the right choice for her and her family, and has now been blessed with healy babies.

 

[sba771]

I am not surprised by your coworkers response. It takes a really special person to raise a child with special needs. Personally, I am not that kind of person and I am able to admit that. It takes so much strength, compassion and giving and often times certain finances. I think I am a good person, but I know I am too selfish to handle a child with special needs. Obviously if something did not show up on a scan and the baby was born with defects or what not I would love and cherish my child and do everything in my power to give my child the best life possible. I had a family member give birth to a severely disabled son (this was before screening was really being done). The doctors said the child would not have lived past 5- he lived until 18. The parents disclosed that had they known, nothing would have changed. They are AMAZING, but for me, just spending time with them and seeing what they had to go through on a daily basis (including being questioned by police on the day their son died) made me realize I am not up for it. I am too weak. I have the utmost respect for people who are able to say whatever will be will be, but that will not be my personal choice.

 

[Kay]

I got pregnant at 35 and had both anNT scan and amnio. Had the amnio results shown a severe genetic defect, we would have terminated. I imagine it would be a heart-wrenching thing to go through, but we agreed we did not want to bring a child into the world to suffer. After we good back the good results, I realized I had been holding my breath for 4 months and trying not to get too attached just in case. The second half of my pregnancy was much better once we knew everything was okay.

 

[packrat]

When I got pg w/our first, at some (2?) of the OB visits Dr asked about testing. I asked if it was required and what it would mean. She said no, not required, just that some parents want to know if there''s a possibility of a problem. If there is a problem, some like to be prepared, and some would abort. She also said that the first testings they do can have false positives etc. I chose not to do any testing at all. I didn''t want to take any chances of false positives and having to do an amnio and fret and fume over what could potentially be nothing. And if there was a problem, I didn''t want to spend the rest of my pregnancy fretting and fuming over what would happen after the baby was born. I wouldn''t have terminated, regardless.

Hard decisions to make.

 

[Tacori E-ring]

NakedFinger, she did make the right decision and sometimes the right decision is not always the easiest. I am sure you will be supportive no matter what. Personally I never really know what I would do until I am in the situation. Hopefully I never will be. I should add she found out there was a problem at her "big" scan and then they did more testing (I believe she did have an amnio) to discover what was wrong with the baby. At 41 your friend probably will have testing done earlier.

 

[Logan Sapphire]

I doubt I''ll ever face this decision since we don''t have bio kids and probably won''t ever, but I would not abort. I probably would get tests done, just to be prepared.

We adopted our first (and maybe only) child. We did say we were open to some special needs...thinking that when you get pregnant, you don''t get to choose what kind of child you birth (assuming abortion is not an option). We did say maybe to special needs that would result from the birth mom''s actions (smoking and drinking)- our rationale was that were I pregnant, I wouldn''t smoke or drink myself.

 

[HollyS]

If I truly wanted to be pregnant, I would not have the amnio done - - only because of the higher than normal risk for miscarriage, and the point at which it is done (many weeks into the pregnancy). And, because of when it is done, everyone knows you are pregnant, and if you decide to terminate, everyone will know that as well. (This is much too personal an issue to be sharing with the world in my opinion.)


Having never been pregnant (that I''m aware of), I''m not familiar with, but have heard of, a newer test which (I think) measures certain protein levels in the blood. It is used as an indicator of certain birth defects, if I''m remembering correctly. I''ve heard that it is done much earlier in the pregnancy. I would certainly have that test.

 

[Pandora II]

DH and I discussed this in detail before we got married as it was an issue that was very important to both of us.

When I got pregnant with Daisy we talked to the geneticists about doing CVS if the numbers came back indicating a high risk after the NT scan. We would definitely have terminated for any major chromosomal abnormality.

I always find it odd when people say that they wouldn''t terminate whatever the results - amnio and CVS don''t just test for Down''s - they also test for other trisomies, some of which are far more catastrophic than Down''s. I could not bring a pregnancy to term knowing that the baby would either die at or shortly after birth and suffer pain in that time just because I didn''t want to make a difficult decision.

Both DH and I have a number of genetic conditions which make life hard enough and we wouldn''t want to bring a special needs child into the world and certainly not a child who might suffer horribly and have no quality of life. My doctors discussed with me what I would do and were I think relieved by my attitude - they were all of a mind that bringing up a special needs child would not be in my best interests healthwise.

Obviously things can happen to a child later in life - accidents etc that mean that you are looking after a child with disabilities, and there is always that chance of not spotting something amiss before the birth - in which case, I would do everything possible to make the most of the situation and the best life for my child.

My reason for doing CVS is that you can find out so much earlier than amnio - and get the results back faster. Terminating at 12 weeks is a very different thing from terminating at 20+ weeks.

In the event, the NT results were so incredibly good that we chose not to have either CVS or amnio.

If you have thought seriously about these issues and formed a decision for yourself then I think it''s remarkably easy to be definite and matter of fact about it. It doesn''t mean that it would be any less devastating if it were to happen.

 

[qtiekiki]

We would base our decision on the genetic disease involved. To be honest, we’ve not talked about this topic the last pregnancy or this pregnancy so far. There’s no family history of genetic diseases and we are relatively young, so we has slightly lower risk. Not that we are avoiding the topic, but I think we don’t talk about it b/c we don’t want to stress over something that didn’t happen.

My first pregnancy (I was 2, we did the quad marker screening b/c that’s the program that California State Dept of Public Health had at that time. The numbers came back normal. Didn’t go onto do any other tests since I was not advanced age. This pregnancy, we are doing the full integrated screening b/c CA changed their Prenatal Screening program and that is now offered. The full integrated screening included two blood specimens (one between 10 – 14 weeks, the second between 15 – 20 weeks) and the NT scan. I am currently 13 weeks, so I did one blood specimen and NT scan already and am waiting for the results. If the numbers come back with bad odd, then I’ll opt for an amnio since the amnio is more accurate.

The thing with the screening tests is that the rate of false positive is extremely high. There are a lot of moms who opt out of the screening b/c of the possibility of false positive.

Amnio is never required. My SIL who had her second son at 36, and her dr. recommended that she get the CVS (performed at 11-14 weeks I think) instead of the screenings.

 

[Italiahaircolor]

I think as a parent it''s ones responsibility to make the best, most informed choices for their children. If I were pregnant and had an amnio that came back poorly--meaning my child would have a troubled life, filled with health complications...I would selflessly decide to spare him/her that, even as much as I want to be a mom.

 

[purrfectpear]

Count me as another who would have no problem saying to a close friend, if the amnio came back with Downs or Spina Bifida (or worse) I would terminate. Less serious issues like heart valves that can be fixed by operations (for the most part) I would continue with the birth and deal with the medical issues.

I''m not sure why you were surprised at what she said? It sounds like you have your issues confused with hers. Clearly she has no reason to feel ashamed over her views.

 

[vespergirl]

When I got pregnant at 29, I had a full genetic screening done. I was concerned because there is a history in my family of hydrocephalus. My husband and I had some long conversations about this, and decided that we would terminate a pregnancy if a child would be born with a severe disability. If you have ever seen the suffering of a baby who is born severely disabled, it was heartbreaking for us to think about having a baby just to have it suffer during its life.

 

[steph72276]

I''m 13 weeks pregnant now and I will not be having screenings done. If we find out there are defects or abnormalities, we will still love our child just as much and deal with it in the best way we can. It''s just my belief that it shouldn''t be in my hands to decide my child''s fate. I''ll leave that one up to God.

 

[MichelleCarmen]

I would not continue a pregnancy knowing that the child would be born with severe handicaps. It would be the most difficult & depressing decision that I would have to make but I simply wouldn't be able to care for a child who needs 24/7 care for his/her entire life.

 

[waxing lyrical]

Date: 7/24/2009 2:29:57 PM
Author:NakedFinger

[. . .]

So just wondering....will you/did you have an Amniocentesis done, and if so did you/or do you know what you will do if the results come back with problems?

Sure wouldn't. Not at all comfortable with a CVS or amnio. My comfort level stops at the first trimester screening, which is what I had done this time. I declined it the other three times. Even with my prior history I wouldn't even think to do the amnio.

If I received a high risk profile from the screening, say, 1/13, 1/10, 1/5, I would most certainly seek out a perinatologist to have a very thorough ultrasound and a fetal echocardiogram done to check for abnormalities associated with the trisomy. That was my only concern this time. Detect or rule out problems and go from there. If fatal abnormalities (T18/T13 or severe NTDs) were "detected" I would carry to term without second thought.