Opting out for downs syndrome test

[pinkyprincess]

Tbh no matter what you would do if you had a positive result I think it is a responsibility to have the test. I had a CVS because of a thick nuchal measurement. It was testing for a range of conditions not just DS. when this came out negative we were referred to a heart unit as this measurement can signal a heart problem with baby. With any of these conditions if the doctors and midwives know it will make sure that you and your baby get the best treatment for whatever the problem may be if any. DS babies for example would need extra care straight after birth.

The CVS has a 2% risk and Amnio 1% if I remember correctly.

 

[cosmicgirl]

I still love my baby too but if my baby had problems that were not compatible with life or would equal no quality of life then I need to know.
Just my personal opinion. If my baby had Edwards for example and would possibly not survive pregnancy or birth I would be devastated to not know until it was too late iykwim.
Again, just my opinion.
I really wish people would stop saying "I love my baby anyway", we all love our babies x

 

[wifeywifey]

Im just glad both my lo's are healthy. If I knew I was going to have a child that wouldn't be able to survive after birth or certain other issues I would have considered my options.

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[wifeywifey]

I still love my baby too but if my baby had problems that were not compatible with life or would equal no quality of life then I need to know.
Just my personal opinion. If my baby had Edwards for example and would possibly not survive pregnancy or birth I would be devastated to not know until it was too late iykwim.
Again, just my opinion.
I really wish people would stop saying "I love my baby anyway", we all love our babies x

Thats what I was just trying to say.

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[CARNAT22]

Where does the whole nasal bone issue come into play? If anyone knows!

I assume that if you opt out of the screening then they cannot tell you if there was any issue with nasal bone at any point as this is another indicator?

(or does that come later??)

My MW only discussed the downs screening BUT in her defence I was very proactive in telling her yes I was the bloods and the nuchal fold checked so maybe she would have told me more if I'd not said yes already LOL

My 7 year old cousin Jake has DS, he has not had as many health complications as some down's kids BUT he does have learning difficulties, lots of food allergies and bowel issue...

He is an amazing, sweet little boy and he attends main stream school (he has his own personal health assistant). He doesn't speak but has learnt sign langauge.

Seeing my cousin from birth to today shows me how much can be accomplished for kids with disabilities and how happy their life can be BUT to say it has been easy would be a lie.

Jake is a beautiful child but he is incredibly demanding - his needs are constant and never ending. My Aunt has dedicated her life to her son and knows that until the moment she dies her life will belong to Jake. Of course this is no different to how most parents feel about their children but the difference here is that Jake will most likely still be needing his Mum to bathe him and take him to the toilet when he is 20.

Sorry I digress....

I've decided to be screened simply because I need to know, if I am high risk I'd like to have some choices open to me... Whether I decided to go any further is another story of course

xxxxxx

 

[cosmicgirl]

The lack of a nasal bone is another marker indicating a high risk of ds. If the sonographer cannot identify the bone, you will be asked to go for further testing x

 

[ISH]

I'm in a minority here... I decided to have the test, fortunately it came out as very low risk, but I very likely would have had a termination if there was something seriously wrong. I am not in the habit of deluding myself, I am extremely easily stressed, I would have been a wreck and wouldn't have coped very well at all.

Thank goodness I didn't have to make the decision. That in itself would have been horrendous.

 

[CARNAT22]

The lack of a nasal bone is another marker indicating a high risk of ds. If the sonographer cannot identify the bone, you will be asked to go for further testing x

BUT if you've opted out of the screening they they couldn't tell your about nasal bone I assume?

xxxxxxx

 

[cosmicgirl]

I'm in a minority here... I decided to have the test, fortunately it came out as very low risk, but I very likely would have had a termination if there was something seriously wrong. I am not in the habit of deluding myself, I am extremely easily stressed, I would have been a wreck and wouldn't have coped very well at all.

Thank goodness I didn't have to make the decision. That in itself would have been horrendous.

I feel the same way ish. I'm under no illusion how severe ds can be, such a wide spectrum.
I also wouldn't be able to afford to give up work to look after a child who needed 24 hr care for life. I'd worry about their long term care, we don't live forever because we're parents
I hope and pray we all have healthy lo's xx

 

[cosmicgirl]

The lack of a nasal bone is another marker indicating a high risk of ds. If the sonographer cannot identify the bone, you will be asked to go for further testing x

BUT if you've opted out of the screening they they couldn't tell your about nasal bone I assume?

xxxxxxx

Theoretically they shouldn't make comment as you have opted out but whether some would make comment off the record, who knows x

 

[CARNAT22]

I'm in a minority here... I decided to have the test, fortunately it came out as very low risk, but I very likely would have had a termination if there was something seriously wrong. I am not in the habit of deluding myself, I am extremely easily stressed, I would have been a wreck and wouldn't have coped very well at all.

Thank goodness I didn't have to make the decision. That in itself would have been horrendous.

Having had three miscarriages, the thought of a termination is abhorrent to me.

BUT the thought of giving birth to a baby that will be in terrible pain and die shortly after birth is even more abhorrent.

The most severe case of DS can result in the above....

I have said to OH if we were high risk we'll discuss our options then but I know myself and I am 80% sure opt for the diagnostic tests... I'd need to know the severity of the condition to make my ultimate decision...

xxxxxxxxx

 

[babyem]

I couldnt do it because you have no idea of the quality of life the child will have until after they are born.

 

[cosmicgirl]

This is where I really struggle. I really really really do not agree with termination but agree, I would not want a lo with no quality of life, with pain, multiple surgeries or whatever else would be needed.
If my lo was found to have lots of problems then I would need to find the strength to reassess my views, and cope with judgement from those who have never been in such a heartbreaking situation
My heart goes out to ladies faced with that choice x

 

[cosmicgirl]

I couldnt do it because you have no idea of the quality of life the child will have until after they are born.

I think that the medical community have a fairly good idea of perceived quality of life based on severity/type of disabilities.
They also know lo's prognosis and general life expectancy x

 

[babyem]

There have been so many cases where this has been proved wrong. Doctors say some children will never walk, yet they do. They have no idea what a person is capable of. They are making predictions, not certainties.

 

[cosmicgirl]

True but they know the prognosis for a child with Edwards, turners, pattau and lots of other syndromes.
They know that if a ds child with an incomplete trachea, multiple cardiac valve anomalies and dilated kidneys is going to be severely affected.
They know that the majority of children with turners and ds are going to have hearing, vision and communication problems.
They know these things through decades of studying these cases and although drs can be wrong (they are human after all) I witness correct prognoses every single day x

 

[cosmicgirl]

Anyway, good luck ladies with whatever you do, fx for healthy bundles.
I'm officially shitting my pants for my test on Monday, please send your positive thoughts my way xxx

 

[ISH]

Fingers crossed, cos, but somehow I know you have a healthy baby, not worrying about you in the slightest

 

[cosmicgirl]

Fingers crossed, cos, but somehow I know you have a healthy baby, not worrying about you in the slightest

Awww thanks ish, I hope so. I'm so nervous. I was saying to my colleagues that 3 children I saw at work today had ds, I felt like someone was giving me signs (hello paranoia!)
I've been on anxiety overdrive, woke up in hot sweats over it last night, garrr can't wait for it to be done x

 

[Jayjay027]

Its been said before, but its personal choice for each woman/couple whether to have it done.

Every woman, every pregnancy and every child is different - and there is no right or wrong answer to this!

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