Genuinely concerned about Down Syndrome risk result! (Title edited by MNHQ)

[sweetmotherog]

Mine has come back as 1 in 1000.

This seems quite high considering other factors. I know someone much older than me who's risk is 1 in 1600...

Yes I know there are women who receive a result of 1 in 150 or even 1 in 80 but those people would have other risk factors too I thought.

Why has my result come back so high I wonder?

That’s very very sad but I know people who’s babies have been still born or died shortly after birth with no explanation as the baby was seemingly healthy.
Not all children with Down syndrome have health complications, mine doesn’t and he gets ill a lot less than most of the other children his age we know who don’t have DS! Surely you can’t think that knowing 2 families with a child that has DS gives you a full balanced, rounded view of the condition?

I do wonder why the NHS have been paying for Down’s syndrome screening for decades if it’s a fairly mild condition?
Aminos have been around since the 60’s.
The NHS must see a different side to the condition as they obviously feel the money they spend on screening is worth it?

Truly sad for any family that lose a baby, which we know happens for so many different reasons. I don't know how to express condolence's to them but hope they found strength somehow.

As mentioned previously the associated health complications and development delays vary massively in severity.
Back in the 60’s people with DS didn’t receive the care and support that’s available today. The average life expectancy for a person with DS is around 65 now I believe. Things change, medicine and therapies are advancing constantly.
If having a child with DS is not the right thing for you or your family that’s fine but don’t assume that all people with DS can’t walk, talk, have poor health etc. Just like everyone else, people with DS are all different

Of course not Gilbert and I haven’t professed to. When we were having additional testing Almost everyone we told told us about how happy and smiley and loving children with DS are. I found it quite patronising to be honest, like they had no individual personality

I meant to add I said clearly earlier that whilst many people with DS have positive outcomes now, more positive than ever, people are forgetting about the serious complications that still exist.

And one family members was 8 years ago so not in the 60s at all. Their baby had serious heart problems which can happen with DS.

Surely a “serious heart problem” is the difficulty not the DS?

No DS causes heart problems. In this case not forming properly.

It’s not uncommon. I also have a co worker with an 8 year old with DS who has had a number of operations to fix her heart problem

Sorry I should say can cause heart problems

Some children with DS have heart defects (hole in the heart) which can be surgically corrected in most cases. Heart defects aren’t unique to DS though and many children undergo these types of procedures. I think it’s not the reason people abort DS babies though. I think they do that because they don’t want to raise a child with learning difficulties.

Do you think? I don’t agree at all.

The thing is we all know- as does OP- that disability can strike at any time and that most disabilities arising from birth can’t be screened for. But this one (and Edwards and pataus) CAN be screened for. So armed with the information you can make a decision. Other disabilities don’t often give you that chance.

I do wonder why the NHS have been paying for Down’s syndrome screening for decades if it’s a fairly mild condition? because there's a financial implication to the State with most children who have a congenital defect. Hospitals will offer abortion for lots of conditions that won't give yo us perfect child. Cleft palate. Dwarfism. Congenital Diaphragmatic Hernia. Let's not pretend they only offer them for the worst conditions

Screening is offered in countries with privatised healthcare also though (more screening, usually)

Well more and more things can be screened for. If that leads to screening out large sections of the population I think we are going to suffer the consequences.

The issue I think her in the discussion of severity is that the people who you meet with downs are the ones who have made it. My baby had hydrops, fluid all round it as well as a nuchal measurement of 5.8mm. This indicated not only heart issues, but also problems with organ failure. This was picked up at my 12 week scan which was actually 13.
I didn't wait for the result of my cvs because u had decided to terminate, not based on ds but based on the fact I was carrying a very poorly baby. However, I still believe I would have terminated if I had been told it was ds without the extra complications. I wasn't in that situation and my choice was really made for me. I was told by a very trusted consultant that I would miscarry if I cont'd the pregnancy.

So I guess that's why the NHS test for it.

I had my 12 week scan today and it came back with the fluid on the baby neck at 4.8, I had a harmony test 2 weeks ago and the fluid was much less - I have now decided to have a cvs where they take a sample from the placenta - has anyone had this? Thank you x

Yes I did