Low risk for Down syndrome but still worried

[thaigreencurry82]

I appreciate this is an emotive topic but I need some advice/insight from others who have been in this position.

My trisomy screening at 12 weeks with nuchal of 1.4mm came back as 1:50,000 for Edwards & Patau but a higher risk of 1:2,600 for Down Syndrome.

At the time I was happy with this risk and decided not to do the Harmony test as it works out as a 0.038 per cent chance. I was 34 at the time of testing.

The 20 week anomaly scan showed no problems.

However now I’m much further along (31 weeks) and for some reason I have been worried lately that my baby might be that 1 in 2600 that has Down syndrome. I think it’s because the Down syndrome risk i received is higher than the other trisomies and also a general feeling that you could always be that one in whatever chance.

I’ve stupidly been googling and have found examples of women who were also low risk but went on to receive a post natal diagnosis of DS, eg one who has posted on here with a 1:1,900 risk and then others on other forums with a 1:50,000 risk.

So in hindsight the NHS screening has not reassured me and I’m thinking about doing the Harmony which they combine with a scan at up to 32 weeks.

Am I worrying unnecessarily or should I do the Harmony?

“as I higlighted the decision not to have an infant with DS is a majority society one. I am genuinely curious about why this is”

Because DS can bring with it a range of health issues. Because it can vary hugely in severity. Because there is a massive difference between a sunny happy toddler and an adult who cannot live independently and will need support that his aging parents may be unable to give. Because there is a difference between a sunny happy toddler and a teenager who wants all the normal teenage things, but can’t have them.
Because what happens when the parents die?

Reading yet another thread where parents and family members of disabled children post unhelpful and cutting comments, I can't just read and run!

nobody posted cutting comments. People have different experience and where just pointing the obvious.

if you posted asking for advice on how to potty train your son who was a late bloomer due to DS and some dickhead came on telling you that you should have aborted him, you would be hurt and disgusted... ask yourself, how is your post any less hurtful?

you totally lost the plot. what has this got to do with the OPs desire to have a perfect child?

Having a disabled child does not entitle you to look down upon anyone who would make a different choice for their child.

nobody was looking down. pp where only stressing that there is no guarantee for a healthy child at all.

Be kinder
you go first.

The Harmony test comes back a lot quicker than two weeks now as they test in the UK and don’t have to send off to America as before. We did ours last week and got the results back this Monday, which took 5 days.
We’d come back 1:14 risk from the NHS screening and I’m pleased to report that the Harmony test showed all was well, 1:10,000 risk.
Can I ask what your other markers were like from the 12-week scan - did they find a nose bone and did they tell you what size the nuchal sac was at the back of the baby’s neck? Ours was great, nose bone found and thin nuchal at 1.3mm. It was my blood results that pushed our risk scarily high. These things happen.

When I had the harmony it was sent to America, still came back in under two weeks although they said to allow two weeks.

There are a multitude of reasons why someone may not be able to cope with a child who has DS.

Some of them could be:

Health issues for the child and or parents
No support
If one of the parents had to give up work due to the child's health issues
Age of the parents
Affect on other children either older or younger
Mental health of the parents I.e could they cope
Who will look after the child when the parents die if they don't have family support

And I'm sure a lot more reasons

To me it's no one else's business what they decide to do.

I know of a few people who really struggle with their child who has DS and it has caused several issues for them, relationship etc

My baby had minor things like colic, silent reflux, kidney infection, hospitalized twice, eczema and constipation and I barely coped with that as I also have anxiety and insomnia with no support. Don't think I could cope with a child who has DS on top of that. I'm just being honest

Some of them could be:

Health issues for the child and or parents
No support
If one of the parents had to give up work due to the child's health issues
Age of the parents
Affect on other children either older or younger
Mental health of the parents I.e could they cope
Who will look after the child when the parents die if they don't have family support

this is so true and describes my situation very much. My child was diagnosed at 3. so what do you suggest for struggling parents who had a child diagnosed several years after birth?
pre natal dx - abortion
dx just after birth - adoption
diagnosis at 2 or 3 - what then?

I am very much pro choice but the way some here speak about people with SN is just upsetting.

"this is so true and describes my situation very much. My child was diagnosed at 3. so what do you suggest for struggling parents who had a child diagnosed several years after birth?"

It's an entirely different thing. Sometimes we have choices, sometimes we this is so true and describes my situation very much. My child was diagnosed at 3. so what do you suggest for struggling parents who had a child diagnosed several years after birth?

It's an entirely different thing. Sometimes we have choices-sometimes we don't.

Sorry about the bizarre double post...

What @BertrandRussell said.

There seems to be a lot of 'aren't they cute?' about babies born with DS. Always smiling, always happy. The same attitude with support for charities: some for working with children, not so much for adults, who are a lot less cute. So where is the support.

I speak as someone who has been involved, in a family way, with adults with DS for over 20 years. I have seen paranoia, dementia, incontinence and more. It is hugely difficult to deal with, and no one knows what the future brings.

It is not about 'eradicating the horror' - there is nothing horrific about DS - but rather making a personal decision about what you can and can't do.

@coffeemachine apologies if I caused you any upset by my post that was not my intention. This is a very emotional topic all round but as others have said it's not the same as what you are referring to.

That's also not to say that anyone who chooses to terminate a baby with DS is looking for some kind of perfect baby as we know that doesn't exist.

It's a personal choice and not an easy place to be in for anyone including what you are going through.

You are exactly why the OP didn’t want to voice what her choice would be if there was an issue. Adding additional worries to her already worried mind was not helpful in the slightest.

Zombie thread !

Hi OP @thaigreencurry82 I hope you are doing ok? i realise this is an old thread but would love to know how you got on. I'm in a similar situation (although my NHS combined screening was a lot higher risk at 1:280, but not high enough to be high risk and now completely anxious about it especially as the babys growth is quite small. All scans have been OK though but now appreciate it doesn't always reflect what is happening. Anyway i hope things worked out for you x