Having an amnio test ruined my life

[nicolejoy]

Are ammnio's common practice in HK? They don't do them unless deamed absolutley necessary in the states due to the risk of infection.

In my experience, I first had the OSCAR test and after a "risk" of 1 in 7 of baby having Down syndrome, was asked whether we wanted to confirm with amnio. We didn't feel any pressure and Dr Chan even emailed me privately with answers to my list of many many questions. We decided to go ahead with the amnio so that we could be prepared, even though we would not terminate. At the amnio appointment, he started the scan first and could immediately tell that our baby had a skeletal problem, and so it probably wasn't DS but something else. At that stage, he recommended NOT getting the amnio as it is less likely to provide a diagnosis - but referred me to a prenatal diagnostician, Cora Ngai. She also discussed amnio with us, but confirmed that there was a high chance of not getting a diagnosis even from an amnio, so given THOSE circumstances, we chose not to have it.

So given my experience, I don't think that amnios are common practice, and even in situations like mine, they are given with plenty of warning/discussion - not a decision to be taken lightly.

And I completely agree with you - it also makes me sad to think that people terminate based on special needs. While my decision has some roots in my faith (I'm a practicing Christian who doesn't like abortion in general), I also figure that there are many things that you can't prepare for - children who fall sick after they are born, children who have injuries that leave them permanently disabled, children who were born with conditions that were not detected before birth - what do THOSE parents do? Disown their kids? Usually they learn to rise above it and raise their kids with love, even though they didn't plan for it... And I think that most parents do have the capacity, whether or not they know it, to be fantastic parents of kids with special needs. All they really need is love - and most parents have that.

Anyway - that's my little "spiel" for the day... I'm not going to picket line an abortion clinic or anything - it just makes me sad... even more so after having my daughter and knowing that maybe, if she were conceived to different parents, she wouldn't have even had a chance to live.

 

[Sage]

I had an amnio because my OSCAR test came back with very high risk too. I chose to have an amniocentesis because I wanted to be prepared either way. If the results came back with a problem, I would then have over 20 weeks to research and prepare for my life with my new baby. Either way, my life would change forever and I want to be prepared and that's what amniocentesis offered me.

 

[carang]

i don't think anyone is negating the usefulness of amnio, but rather they are questioning what happens after the results are received.

when i was pregnant with my first, everyone had the prelim tests (oscar, i think it is) free of charge from the gov't clinics. when my second was due, they had changed it to only women over 35 (i was 34)... now, it seems, they have changed it back.

i declined to take the test. i decided that it even if it came back with a high probability of something being wrong, i'd still keep the baby, so all it would have done was allowed me to prepare more for it...while i would have preferred to have an idea of what was to come, i figured my pregnancies were hard enough, i didn't need that as an added worry. i would deal with it if it happened.

 

[nicolejoy]

Cara - it's interesting what people will do with the knowledge. It is true that something like 90% of babies confirmed by amniocentesis to have DS are terminated. So theoretically only 10% who have an amnio are using that knowledge to "prepare". Many like you opt not to have an amnio if they wouldn't terminate anyway. I personally would have been like that as well - but my husband was one who wanted to know, so we decided together to go ahead with it. He's the same with everything - Christmas presents, gender of the baby, everything!

In our pregnancy, I really had an emotionally hard pregnancy - I even partially prepared myself for losing her, started thinking about funeral plans, whether we would repatriate her body back to Aus, etc... But when she was born, I really hit the ground running in many ways.

My husband, on the other hand, although he wanted to know, didn't process as much during the pregnancy. There was good and bad to that - he never really dealt with the trauma of perhaps losing her - but that turned out to be unnecessary anyway. When she was born, though, he struggled a lot more with the reality of what her condition meant for her and for us as a family.

It's kind of ironic that even though he was the one who really wanted to find out, but I was the one who it probably affected the most. Even if we didn't want to find out though, my daughter's condition is primarily a skeletal one and so it's strikingly obvious to any qualified obgyn on ultrasound and we couldn't have avoided finding out, unless we had no ultrasounds after 14 weeks or so.

Screening for DS is in the future going to become much "easier", there are diagnostic tests that can now be done in the first trimester by picking up fetal blood from the mother's bloodstream. The test, like amnio, is conclusive - AND it is non-invasive and hence has no risk of miscarriage. Within our life time, it probably will become routine and sadly may lead to more terminations of babies with DS as it is often "easier" for a woman to terminate in the first trimester before the baby starts kicking and maybe even before they have even announced their pregnancy...

Here's the link to the new diagnostic DS test if anyone is interested: http://abcnews.go.com/blogs/health/2011/10/18/safer-down-syndrome-test-to-hit-market-monday/ - it's very accurate and can detect DS at only 10 weeks...

 

[ozmerc]

I personally opted out of even the OSCAR testing with both my pregnancies. I looked at the chart which shows risk of genetic problems relative to age and decided that as I was low risk at my age it wasn't necessary. I didn't want to cause myself unnecessary stress with a false positive result.

The rate of these problems occuring doesn't start to shoot up until after 35, which is why I guess the HK govt used to only offer it to women over 35 in the public hospital system. But I had some early appointments at a public hospital and I too saw that video on loop and received all the literature. What I don't understand is why the hospital system is now pushing this testing with everyone regardless of risk. It seems to me a waste of resources for an already stretched maternity system. I told them I was opting out and they still made an appointment for the scan because they couldn't quite believe I didn't want it even though I'm well under 35. I don't get it.

 

[wasabibunny]

I agree with nicolejoy but struggle to see why anyone would want to keep a disabled child knowingly. It's a burden on society and somewhat of a selfish choice. There are already so many orphans and disabled individuals and starving children.

 

[charade]

I agree with nicolejoy but struggle to see why anyone would want to keep a disabled child knowingly. It's a burden on society and somewhat of a selfish choice. There are already so many orphans and disabled individuals and starving children.

Wow! By that logic noone should have children anymore since there are already 7 billion people on the planet. I think you missed the part where Nicolejoy said how much joy her daughter brings her.

 

[carang]

hmmm.... in another thread, thanka mentioned she was tired of being PC about some things.... i guess wasabibunny feels the same.

 

[jvn]

I was going to say the same thing as Charade, that logic applies to all children. We shouldn't have any more until we've adopted all the orphaned or unwanted ones, disabled or not. I'm not even going to start on a list of all the disabled or 'imperfect' children who have gone on to contribute vast amounts to our society because I don't think an individuals worth should be based on some abstract judgement of what they have taken out of society verses what they have contributed. Yes, some children are more expensive and harder to raise, it does not make them less worthy members of our society.

I remember discussing this with a pregnant friend before The Boy was born, that there is a test for DS but not for say autism, which in it's most extreme form I think I'd find more difficult to deal with because it makes emotional connections
so hard. I have no experience with either condition so it's just speculation.

I don't know how people find the strength to parent a child with a degenerative or terminal condition, this article had me in tears http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html

 

[wasabibunny]

I know my msg would provoke a lot of "omg I cannot believe you said that" posts. Having your own children I can understand. There is a lot of gratification to reproducing. And yes while there are exceptional disable people, mine was a personal judgement that "statistically" it is more of a burden on society to raise a disabled child and they are less likely to contribute. But that does not necessarily downplay a parent'a courage or love to raise that child. But, the joys and gratification of raising a disable child I would consider more selfish since those feelings most likely only benefits the parent and not society (statistically speaking). Of course there are exceptions. There are probably many that share my view but would not want to bring it up in polite company.