1 in 2 chances for Down syndrome

[Whatiswrongwithmeffs86]

Currently awaiting Amino, been given 1 in 2 chance for DS. NT measurement of 4.3mm and high blood results. I feel like im waiting for the inevitable to be confirmed. Could you tell me your experience, good or bad, if you don't mind sharing? I have a long wait until 2nd January to get the amino and need to stop being so anxious.

I don't personally have dc with downs but i have volunteers at work with DS. They are lovely young adults and live fairly independently away from their families but have support workers, none have other health issues though which is a big concern.

I have a DD with Down syndrome. I struggle with threads like these and hardly read them because people with absolutely no idea what Down syndrome is actually like comment with their friends cousins niece had a ‘Downs baby’ and the stories are completely unhelpful. If your baby does have Down syndrome please, please speak to somewhere like Down Syndrome UK to get a more balanced view before making your decision. I am only too happy to answer any questions about what life is like, happy to share positive and negatives from my experience. Please PM me if you wish. Every single child and adult with DS is different and is their own person with their own needs and personality like any other person so the I know someone who knows someone stories do not help!

I hope your scan results come back quickly with good news.

Wishing you all the best x

We had a high NT measurement and 1:5 odds of DS.
We had a harmony test and results were 1:10,000.
Baby was born with no issues at all.

Whatever happens I wish you all the strength you need @Whatiswrongwithmeffs86 .

I refused all tests and was pressured and constantly asked as to why I wouldn't have any. I was fine with scans and told my baby looked likely to have Edward's Syndrome. I knew I couldn't make the decision to terminate. I don't know if my two previous miscarriages were relevant here. I decided to refuse, again, an amino and see what happened naturally.

I fully support any woman who choose all or no tests, to terminate or to keep their baby.

I wish you all you desire and need @Whatiswrongwithmeffs86 whatever the results.

Just wanted to send you my best wishes. I had a 1 in 5 chance and the wait was the hardest time of my life

I know what you're going through, it is agonizing. Praying for you and hoping you get a swift result with the words you want to hear. All the best xx

It is an awful wait to find out.
I would highly recommend speaking to ARC, as another poster has recommended as they were such a great support to me at the time.

Sending you lots of love xx

I too have only just seen this thread and am thinking of you. It's so difficult because no one wants to think about potentially aborting an otherwise healthy baby - but ultimately that's why we have these tests, because not everyone can give a child with special needs the home they need.

My cousin had DS. In the end, although her parents had 2 more children (both "normal") their marriage couldn't survive her needs and they separated with the mother taking the two younger children. My uncle tried to raise her, but he struggled and was going to put her into care - it caused a massive family fallout. My grandparents took her in instead, but most of the family pretty much shunned my uncle for his decision. It ruined his relationships despite the fact it was the best decision for their family (even as a tween/teenager myself I recognised that he was doing the right thing). Anyway, my grandparents had her until she was an adult and when they got too old to meet her needs, she went to a group/adult home for people with LD/SN.

We loved her to bits but her difficulties impacted the entire family and it certainly made me know that I would never be able to cope myself.

I’m so sorry you’re going through this, OP.

FWIW, my colleague had a 1-in-2 chance of DS in her second pregnancy. Her daughter was born premature but otherwise perfectly healthy.

My chance was 1 in 240, scans showed normal femurs, healthy heart, normal nasal bone, nuchal translucency was within the normal range. My DD was born prematurely with DS, multiple heart defects and the tiniest little button nose. Bit of shock, to say the least!

My DP and I had agreed that if tests showed it was a DS pregnancy, we’d terminate. Now, I’m so glad we didn’t know until she was born, as we can’t imagine life without our little bundle of mischief. Yes, life can be difficult, and I do worry a lot about what happens once we’re gone, but there are no guarantees with any family set-up.

Like PPs, I’d advise you to look at the DSA website for up-to-date info on what life is like nowadays for people with DS, as a lot has changed. But whatever the outcome of the amnio, and whatever decision you make if it comes to it, I wish you all the very best. xxx

Thinking of you OP. The wait must be difficult.

Thinking of you OP. I was in your position 5 years ago and sadly my test results came back positive for DS and we decided to terminate. The biggest factor for me was that we already had a child and I didn’t want to burden him with a disabled sibling who he would become responsible for later in life. It was an awful period of my life and while time and distance helps, DH and I both still feel immense sadness about it 5 years on. I don’t however regret the decision which was the right one for our family.

Just to balance out the (very joyful) miracles, my best friend had a similar NIPT result to you last year. She had an amniocentesis where they told them on the scan exactly what you were told - there were no physical markers of Down syndrome. Her and her husband became quite hopeful, but a few days later it was confirmed their baby had Down syndrome.

I’m not trying to be negative, but my friend said it was the hope after the amnio that was the worst thing.

Best of luck to you xxxx

Hoping for you OP.

That sounds hopeful, thinking of you OP.

Family by marriage had a similar situation. DS child was on the very low end of the spectrum and needed constant care and attention. The younger sibling got almost no attention (and ended up trying to kill herself several times as a teenager over it). The marriage ended when they were both primary school aged because the dad was tired of his life being 'hampered by' the needs of the child.

DS 'child' is now in his 50s and in a group home. That only came about after his mother could not longer look after him due to health issues of her own (she subsequently passed away), and even when she needed support from her ex, his dad, he refused because he was terrified he would be 'stuck with him' and he 'deserved a life' (unlike the child's mother, apparently). His own words.

What a heartless bastard.

🤞🏻your baby will be healthy, OP.

🤞🤞 for you @Whatiswrongwithmeffs86
Its not an easy situation to be in.

Wow - both stories are so sad for everyone involved, but especially the girl expected to be her brother's lifelong carer. It reminds me of the girl in Love Actually.

For those who are talking about siblings having to take on the care of their disabled adults brother or sister: our learning-disabled son is currently at an excellent day centre and will in time be going into supported living. Yes there will be a certain responsibility for when we're not around but isn't that part of being a family?

Of course @Abracadabra12345 and all families and siblings would embrace whatever happens in life.
This senario is slightly different though. As medical science has progressed to enable these tests to be carried out, and are forcing people into making a choice. Some conditions are mild, others not. It’s not the same as a disability from lack of oxygen or a car accident for example

Couldn't agree more. The anecdotal stories about extreme cases are very sad, but having personal experience of working with many many children and young people with additional needs of different types including autism, DS and other diagnoses, these cases are in the minority. And as you rightly said, it's part of being a family - families support each other - do we not have kids in case one of them has a disability? Or in case we develop an illness later in life and become less able? The need for perfection in life is disturbing for me. I wonder what will happen when medical science advances further - as it ultimately will - to be able to detect other conditions in utero. How much do we screen out before it becomes unethical?

Oh, it’s already unethical

But forced upon the public by the medics and scientists