Opting out for downs syndrome test

[furbaby]

Weird I suddenly thought about this thread i started right at the beginning of my pregnancy- I just wanted to say that now I am nearing the end stretch, I still don't regret my decision not to find out- at the time i didn't know if it's something i would have wanted to know later, but I can happily say that I'm ok not knowing and I wish all those women who are currently in the process of finding out or deciding whether or not too so much luck, I hope all of your try women have healthy happy babies


A bit pointless really... but my thoughts are scattered everywhere these days! xxxx

 

[Parker7]

I think I would definetley like to know either way. Not just for DS but for anything else too that will effect it's life expectancy and quality of life too.
If I discovered something was seriously wrong, then I think I would terminate. If I discovered DS.... I don't think I would.

 

[cosmicgirl]

Agree, it's not just ds they test for and some of the conditions are not compatible with life.
I suppose with regards to ds it all depends on if the results would change your plan. For me it would but for others it wouldn't change a thing. Really a personal decision x

 

[Spinneygirl]

I had the test and the fluid result came back low and am still waiting for the blood test to come back. We have already decided to terminate if it has downs as we have it in the family so we know first hand how difficult is. xxx

 

[cosmicgirl]

It's such a hard situation isn't it, hopefully we won't have to make that difficult choice x

 

[mrswoody]

it is such a personal choice and people definitly shouldn't be judged on their decision. Mr W and I have decided we do not want to know if baby has DS as many grow up to very independent adults. However, if there was a disability that required full on care, not that I'm saying babies with DS don't, then I think it would be something we would have to think hard about.

 

[x_PlaceboDanii]

I was offered a downs test but rejected as im needle phobic and felt a bit uneasy about needles, its not really a huge risk factor in either mine or OH's family as none of our relatives have it. , It seems a bit strange how i was offered it when i thought the only people that we're at risk we're over 35 or had a history of it in their family! We've had 3 scans and the baby appears to be growing and looking normally

 

[cosmicgirl]

The thing with downs that worries me is that there is such a vast spectrum of levels of disability. I treat at least 3 ds children each week. Some can communicate well and will be semi independent as they grow, some are somewhere in the middle and some are severely disabled, can't speak, can't communicate, have multiple heart problems requiring surgery and some need a tracheostomy too.
So when people say oh they are lovely children, well yes they are but you do need to bare in mind that a lot are severely handicapped. Another thing that worries me is who would look after this child when me and oh die?
Just my reasoning from experience of these lovely children and fab families x

 

[cosmicgirl]

I was offered a downs test but rejected as im needle phobic and felt a bit uneasy about needles, its not really a huge risk factor in either mine or OH's family as none of our relatives have it. , It seems a bit strange how i was offered it when i thought the only people that we're at risk we're over 35 or had a history of it in their family! We've had 3 scans and the baby appears to be growing and looking normally

That's not true, I have mums of ds children in their early 20's and rarely does ds run in their family.
Risk does increase with age but anyone can have a baby with ds, whether it's in the family or not x

 

[Hope81]

In Norway the test for downs is illegal due to Christianity reasons so I couldn't have it. I would opt for a termination if the baby had ds. Not all babies with ds will grow to be ok. Lots of them have multiple cardiac problems etc.
I think this world is hard work enough even when you don't have a disability. I would suffer to see my baby suffering every day of its life.
As Cosmo said if sth happens to us who would look after LO??
unfortunately for me the test wasn't available ( nuck fold was ok though) so its really to God hands what will happen.
I will love my baby unconditionally regardless I just hope I will not bring a poor soul in this world that will suffer its hole life.
Ds is not the only genetic abnormality but yes sometimes is the most forgivable one and some ds kids are wonderful kids.
Please don't judge me, it's only my personal opinion and I am angry that at the name of Christianity I didn't at least get a choice...

 

[cosmicgirl]

Not giving someone a choice isn't very Christian though is it? I love the way that religion can control and dictate to people in this day and age. I thought god wanted free will for all men! x

 

[furbaby]

I'm not religious so I can't really comment on that aspect....

For me my personal choice is I wouldn't terminate for downs- I haven't even given myself that option as I don't know..... Thats not saying I didn't have the anomaly scan which is there to ensure that there are no anomolies present or if there are that they can be fixed or are not life threatening- cleft palate- extent of a heart murmur etc. If I was told that my child would die soon after birth or be in a vegetable state or had little to no life expectancy then I don't think I would personally continue with the pregnancy.

I agree it is a very personal choice - I suppose I have only had positive experiences of children with downs, and generally speaking I'm not for abortion- that MY choice I would never try to change the mind of another woman or condemn them for that at all.

christianity is but one religion and the masses should not have to conform to one belief- for that reason I don't think its fair that your unable to test on that ground.

xxxx

 

[babyem]

I've not had the tests.

If it comes back high risk with the blood test, then you can have the amniocentesis which has a 10% miscarriage risk linked to it. Without the amniocentesis you cant be sure if the baby has a syndrom or not, and I wouldn't have it done because of the associated links. I dont think you can prepare yourself without having more invasive tests.

 

[furbaby]

I've not had the tests.

If it comes back high risk with the blood test, then you can have the amniocentesis which has a 10% miscarriage risk linked to it. Without the amniocentesis you cant be sure if the baby has a syndrom or not, and I wouldn't have it done because of the associated links. I dont think you can prepare yourself without having more invasive tests.

thats why i didn't - I would never have had the amniocentesis so opted out of the blood tests as I didn't want to spend the pregnancy worrying if I was high risk - if thats what it came back as- I did wonder if I would regret that decision as the pregnancy progresses but fortunately for me I haven't.

 

[CARNAT22]

I know this is an old thread but as I had my booking in appointment today it is fresh in my mind.

I have decided that I do want the screening. It is simple and non evasive and whilst it is not fool proof, I would like to know if my baby is at higher risk.

At least that way I can make a proper informed decision about having futher diagnostic tests if I come back high risk.

That is not to say I would 100% have the diagnostic tests though.

OH feels the same, it's better to be prepared and we can make an informed choice of need be...

However I respect everyone's individual choice.

xxxxxxxxxxx

 

[babyem]

I just thought it was a waste of time having a blood test when I knew I wouldnt go further with any investigations.. Someone else may as well have the blood test instead.

 

[furbaby]

However I respect everyone's indivdual choice.

xxxxxxxxxxx

I think thats the point isn't it.... what i feel is or isn't right - can only apply to me I can't decide or make decisions for anyone else it isn't mine or anyones else's right

For me I knew i wouldn't have the amnio and termination was simply not an option so weighed it up against the wanting to know versus the uncertainty for the whole pregnancy.

I love that on this forum regardless of how strongly (or not) we all feel about issues that it doesn't resort of unpleasantness xxxx

xxxx

 

[FirstBabyEek]

We decided to have the blood test and but wouldnt have further testing if we came back as high risk as we would love our LO no matter what. However since making that decision I think I was being very naive as there are other choromosal abnormalities aside from the DS that we all know about. I have also since seen others go through the heart wrenching decision of 'what to do next' dilemma when their results came back as high risk.

The risk of miscarriage for further testing is far less than 10%, depends on who you ask I guess, but NICE put it at just under 3%.

Regardless, I dont think it something that we can ever really prepare ourselves for unless we're in that situation. I fully respect the decision of those that dont want to test and those that do and then decide they want to go on to have further testing and indeed terminate - it must THE WORST decision of their lives to have to make, I thank God everyday that I was lucky enough never to have to make that choice.

 

[FirstBabyEek]

However I respect everyone's indivdual choice.

xxxxxxxxxxx

I think thats the point isn't it.... what i feel is or isn't right - can only apply to me I can't decide or make decisions for anyone else it isn't mine or anyones else's right

I love that on this forum regardless of how strongly (or not) we all feel about issues that it doesn't resort of unpleasantness xxxx

xxxx

Completely agree!!

 

[Karate Kid]

However I respect everyone's indivdual choice.

xxxxxxxxxxx

I think thats the point isn't it.... what i feel is or isn't right - can only apply to me I can't decide or make decisions for anyone else it isn't mine or anyones else's right

I love that on this forum regardless of how strongly (or not) we all feel about issues that it doesn't resort of unpleasantness xxxx

xxxx

Completely agree!!

Same.... we can't change people, places or things, we all have our rights, beliefs and value systems. I am a Christian and I believe that the only way forward in life is to respect others choices and not to judge.

My husband and I chose to have the Nauchal test and bloods, by God's Grace we came back with a low risk result and therefore we did not have to think about any further tests. I cannot imagine how dificult it would be but for myelf and hubby a termination was out of the question. We talked about what we would do though and like So Hopeful we would have wanted to be as informed and prepared as possible.

In regards to all the 'what if's' ie. 'what if I die' the same could be said about a child without DS.... nothing in life is certain.

xx