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?

“Nip it in the bud” I know you are most likely hormonal OP but Christ what a phrase to use.

I never went for the test after 3 girls I went to school with were all given extremely high odds (1:3 for two and 1:10) none of their children have ds. But instead of enjoying their pregnancies they sat worried the entire time that they wouldn’t cope etc. All 3 women were 20-25 not high risk by age or family history and none of them could afford/get the harmony test.

And I suppose I know myself I couldn’t cope with an abortion so it wouldn’t change my mind.

It’s less than a 1% risk.

This post is really stressing me out. Why do I never learn to stay off these boards as they just make me anxious. I had a low risk result and just hoped for the best. How likely is it actually that your baby will be one in the however many thousand that will have Down syndrome ?! It's statistically quite unlikely. Just get the harmony test, although that also won't tell you 100 percent.

I'm angry at myself for even reading this and it making me feel unhappy / stressed out about my own situation. I had made my peace with it. I'm so done with these stupid boards, when TTC I convinced myself I would be infertile, as I read so much negative stuff and now I'm convincing myself my baby is going to be disabled, even though medical tests have showed me that it's really quite unlikely. When will I learn. Over and out- best of luck to everyone, but this is all utter unhealthy BS that I cannot deal with.

You’re low risk.

It isn’t a quiz OP, going to speak with a consultant won’t mean they’ll change your score to 1/10,000.

Why are you so worried? Why can’t you accept you’re low risk and that is a blessing.

Every woman will have some form of risk of having a baby with downs. There will always be that woman who falls into the 0.1%.

You’re risk could be 1/10,000. You still have a risk.

Just accept that you’re more than likely going to have a perfectly healthy baby.

A disabled child may not be what you want but to describe a disabled child as a "threat" to your current child and some if the other language you have used makes you sound a bit unhinged. This new child will be your child also remember. You will have two to feel like a mother tiger about.

The harmony test is not diagnostic, it still only assesses risk. It also gives false positives and false negatives (I know it says 99% accurate but when u research it thoroughly it's not that black and white and I've talked to consultants about this in detail)

Your only answer for a diagnostic yes or no (depending on how far along u are) is an amnio which obv comes with a risk of miscarriage

Sorry, I don't know why you're flaming the op. They want to minimise the risk of having a disabled child. Although at your age, I'd be happy with a 1 in 1000 risk which is very low and I would check the nuchal measurement as this is the biggest indicator.

I had a termination last year as my baby had fluid all round it including a massively raised nuchal, I was told by the consultant at fetal medicine the baby was very poorly and would miscarry anyway. I opted to terminate before receiving the resukts of the cvs. It was t21 and I was told on the morning of my termination. My choice was taken away from me really as baby was very poorly. However, I'm not afraid to say that had it been diagnosed with t21 and not surrounded by fluid I think I will have still terminated.

Although it's hard to say what you would do until you are fully facing the situation. But a lot of factors go into that choice.

I think there is a perception from some that downs is a minor disability. This can be the case for some babies, but lots of downs babies simply do not make it because their disability is so severe and their organs fail.

We have edited the thread title for you OP.

This thread is so sad to read.
I think a lot of people don’t really bother to find out about Down syndrome and instead make huge misinformed assumptions based on outdated information about what having a child with DS would be like.
I don’t believe there’s a perception that DS is a minor disability, if that were the case then the termination rate of babies with DS wouldn’t be so high! I think that unfortunately people look at the worst case scenarios and base decisions on that.

If that fetus had the disability so severe, who on earth would take care of them when I'm gone? I'm sure the burden would likely fall to my DS, intentionally or not. I could never let that happen to my boy
And what will you do if something happens to your baby after birth that leaves it severely disabled? Or something that can't be picked up. Significant autism, oxygen deprivation at birth etc.

I don't know any parent of a child with a significant disability where they felt their "healthy" child's life was worse off for loving them.

You assumed earlier i disapproved of you having an abortion. I don't, but only because i think when you can only see a "less than perfect child" as a hindrance on your existing child, you would be better off having the abortion.

I posted earlier. Ironically although the amniocentesis was clear with my ( now adult) DS he is in fact severely disabled. I had another amniocentesis with my DD as I would have struggled with another disabled child although again it was clear so no decision needed.

However she is a loving sister and friend to him and they have enhanced each other's lives. I too struggle with the suggestion that the lives of non disabled siblings are ruined by their disabled bothers or sisters. To be clear I am absolutely pro choice so not about that.

I didn't bother getting the test. We tried for 3 years to get pregnant and when it finally happened, I really wouldn't have been aborting based on something like downs syndrome where the childs quality of life is still quite high in a lot of cases. Don't get me wrong, I'm sure parents face many battles caring for a child with downs syndrome but for me it's just not something I would abort over.

We all have different trains of thought but OP, your words sound so cold and wrong. This is your child you're talking about and you seem so desperate about this test over just enjoying your pregnancy. I think you need to calm down and either get a harmony test or accept there's a very low risk. Disabled children need chances too and I understand you wouldn't give one a chance but there's many people on here with disabled children and seeing your blunt words saying you would totally abort if you knew your baby had downs syndrome is just a little bit too much. There's other ways to word it and also place to voice it

Sorry, I don't know why you're flaming the op perhaps describing disabled siblings as a hindrance and a threat to their other child isn't helping people pile on the empathy

I really think it's the choice of the individual and its about how they feel a disabled child will impact on their life and their families. Also to consider at times is the age of the mother and father. If they are in their 49s for example, how will they manage liking after a disabled dependent in their old age and then leaving behind the child when they die.

Yes, I know lots can happen, you could have a disabled child and nothing could come up on scan (although less likely to be severe esp with the accuracy of scanning these days) You could die when you're young anyhow and leave your child orphaned, you could give birth to a psychopath etc.

But some people may want to minimise the risk, and that's their choice and entirely up to them.

I think op is not cold, but struggling to express themselves. I would also consider the impact on my existing family's life. I'd have to give up work to look after a severely disabled child, and yes my existing child would have to slot into the new family dynamics. I don't think there's a ytqhi v wrong with considering that.

Anything!

This post is ridiculous. 1 in 1000 risk is tiny. Ok someone has to be the 1 but the risk is minute.

My test result in my first pregnancy came back high risk, child doesn’t have downs but I’d have been over the moon with a 1 in 1000 risk.

We had a 1 in 4 chance of downs syndrome. We didn't have further testing as it did not alter our views on the pregnacy/future child. I wish we hadn't had the testing as it upset other family far more than us and led to some difficulties. I think everyone should think much harder about whether to have antenatal testing or not.

Or to put it another way, the risk of miscarriage from invasive diagnostic testing would be about 10 times your risk of the baby having downs.

Agree @57Varieties the risk is actually a normal risk and in line with the average risks at the ops age.

Rubyroot we would all consider the impact of course but to be so blunt on a public forum is just, in my mind, bad taste and inconsiderate.

There's likely some poor women that has a child with DS on here reading the OP's comments and thinking do people really think children with DS are a hindrance and a burden. It could all just be worded a bit more tastefully. Disabled children and adults and their parents and carers have enough to deal with without tacky words like that put on them

I don’t understand all this. If the NT is within normal range doesn’t that almost guarantee the baby does not have Down’s syndrome?
That’s what I thought anyway,

Was this pregnancy unplanned by any chance OP? They way you talk about it is very concerning.

Have you ever met someone with downs? I live close by a cafe run for people with disabilities to work and live and normal life and I’ve met a few people with Downs. I think you’re over thinking the disability, they aren’t vegetables that can’t eat, walk or talk.. unless of course it’s extremely severe which I’m guessing would have been visually picked up on your scan measurements anyway. They are normal functioning members of society who now grow up, live their own life, get married and have children of their own if they want to. You’re speaking as if you may give birth to a brain damaged child, not a Down’s syndrome one.

I’d have the abortion, you’re clearly not in the right state of mind to carry and bring up another child if you see them as anything less than your first child.

I really think it's the choice of the individual and its possible to have that opinion without talking about babies being a hindrance and a threat to their siblings.

A child with Down syndrome isn’t necessarily going to be severely disabled. I work and so do all of the other parents I know who have children with DS!