Downs tests results bad news

[bethandgus]

Hi all.

I'm not entirely sure what the pre screening tests are called, but the midwife just called and my results came back as high at 1/14.
Apparently 1/150 is considered high risk, so 1/14 has knocked me for six.

Has anyone else had high results, gone on to have more bloods and possibly the fluid from the womb test (I don't know the names, I'm in shock) and had a healthy baby?

I'm absolutely devastated. After over 3 years of trying and intervention from specialists, I'm at this shit stage.
Please help 😔

My goddaughter has Downs and is an absolute joy.

It's not what you were expecting, and life will be different, but life with a baby will be different anyway.

1 in 14 means there’s a 1 in 13 they’re fine.

conversely, my friend was given 1:10,000 and her son was born with Down’s syndrome.

until you’ve had the tests you won’t know but yes, statistically, if there are 14 of you in your position, 13 people will go onto have a baby who doesn’t have Down’s syndrome

Hi op, with my 4th child I found out a little late about the pregnancy, at my 1st scan I was 21 weeks. We were told our baby had soft markers for genetic syndromes including a thick nuchal fold, and calcium spot visible in the heart. I declined the amniocentesis test and delivered a healthy baby who simply has a chubby neck because he's a chunky little thing. I know it's not quite what you were asking but just wanted to throw that in here to show that having signs of being high risk doesn't always mean they will have downs syndrome

We were given odds of 1/12 too after the 12 week bloods and had a CVS - where they take a sample from the placenta.
It came back negative for the trisomies, and we went on to have a completely normal pregnancy and birth. We did have additional growth scans throughout just to make sure he was okay in there - as the blood tests showed v low PAPP-A, which can be linked to placental failure, premature birth etc, they just wanted to keep an eye on him.
Good luck 🤞

1 in 14 chance they have Downs. 13 in 14 that they haven't.

Mine was 1 in 25 because of my age. I had an amniocentesis which was surprisingly easy and painless, which gave us an absolute all clear.

Take some time to think what you want to do OP. xx

My friend tested completely clear and her gorgeous son was born with Downs. He is doing brilliantly. It's hard work, and they've had to put the time in with extra therapy both at home and with professionals but he's just started mainstream school.

I know its a shock and there's grief, but it's not the doom-laden prognosis you might think. Have a look at some of the support charities out there.

We got 1:14 at our scan at King's after they put my age in and some other data. After having the blood test they offered, we were down to one in ten thousand. Our son wasn't Downs.
I refused the amnio centisis test as there's a risk of miscarriage

My results came back as 1/4 with my 2nd child. I was only 28 at the time and so no obvious reasons why it would come back so high. It was also high for another genetic condition, although I don’t remember which one now

I decided to have the amniocentesis test, sobbed all the way through it but was given the all clear and I went on to have a healthy boy who is now a hulking 14yr old. I don’t know why his results were so high, but we are proof they can be incorrect

The care I received from the midwives and the consultants was outstanding - I felt supported and unjudged throughout. It’s a very personal process - and so I hope you get the same level of support and care that I did

Hey OP, sorry to hear you're going through this 😔
I find that putting into percentages helps a lot. Your odds are 7% so there is 93% chance that the baby will be absolutely fine! I am assuming you had the combined NHS test so they will likely recommend the NIPT blood test which has over 99% accuracy. If this also shows high odds, they will ask you if you want a diagnostic test which confirms a yes or no. Many people have been given high odds in first test and then really encouraging results later on so try not to stress. Wishing you all the best! Currently waiting for my results too. Sending love

I had 1 in 25 chance last year, ultra sound was normal measurement but blood tests were 5 times higher. I opted for the amniocentesis, where they draw fluid and test the chromosomes, and results came back OK and i went on to have a healthy baby boy. It was a very stressful time and can understand what you are going through. The only 100% way to know is to have the amniocentesis but that comes with a 1% risk of miscarriage. It was the right decision for us but it may not be the right decision for you. I felt I had to know and couldn't worry for the rest of pregnancy, not knowing for sure.

Our odds were 1/9. DD doesn't have Downs.

I remember how shocking and scary the whole thing is. Thinking of you x

My 12-week test came back super high risk. Similar ratio to yours. Remember, it’s still unlikely. However, I was then sent for the follow up specific blood test, and it same back as 1:1,000,000 chance. All good.

Then 20-week scan was full of anomalies and I was sent for a rapid amniocentesis. Not a delightful experience but also, not the worst. I’d actually have one voluntarily again for peace of mind. The miscarriage risk is considered 0.3% now. The 1% was based on data from the 1970s. The amnio results were totally normal. Baby born absolutely fine.

So, don’t fret just yet. Sometimes things come back alarmingly, but that doesn’t mean your child has a chromosomal issue. Take all the tests they offer and go from there.

My score was 1/37, mostly due to my age.
The amniocentesis wasn’t pleasant but it did give us assurance. My daughter is now 19.
Good luck.

With that kind of result, I would be wanting further tests whether amnioscentesis or NIPT. That way you can at least make an informed decision.

I had one in nine, had an amnio, sprog was fine. The odds are shorter but still on your side.

Currently teaching the most beautiful downs girl in a mainstream primary and have a friend with an adorable little downs boy who is thriving. It doesn't haven't to be the end of the world. This is why I didn't have any of the screenings during any of my pregnancies. I couldn't face the months of pointless worry when everything could be perfectly fine like so many pp have said.

Don't despair!

While I'm delighted your goddaughter is an absolute joy, you cannot guarantee that outcome for every parent with a child with Down Syndrome. It's a spectrum, and for every child like your goddaughter, there are others that will never be able to live independently and require round the clock care and supervision. My step cousin is one of the latter, and now that his mother is in her 70s, it's been terrifying for her trying to ensure he has support after she's gone, especially as his father refuses to do anything to support him as he's afraid he'll "get stuck with him" and he "deserves a life of his own".

You have to be open to all the potential outcomes, OP. I suggest testing now so you can then decide what you want to do.

Hi op I am so sorry you are having such a difficult time. I had similar and had an amniocentesis as I would not willingly have a Down's syndrome child. I had older children and just felt it would be unfair to them BUT no judgement on anyone else's choices.

I do hope you get the best support xxx

I had 1 in 15 for both my pregnancies, but I was in my 30s and apparently and that raises the risk in the calculation. Had an amnio for both, both absolutely fine. As previous posters have pointed out, although one in 14 sounds high, in fact the chances are much greater that your baby will be OK. I remember the panic - I had to go home from work I was so upset the first time. The second time I took it much more in my stride as I knew with my age it was par for the course.

I feel for the sake of balance I need to agree with this, if the outcome is not what you want, it is okay to decide you want to have an abortion. A lot of the previous posts seem to assume you wouldn't. For some people it's a joy but some children with down syndrome have complex health conditions, and very low cognitive function.

I had a high risk for my last pregnancy, largely due to age. I refused all tests - because I felt that even though they might come back as not having Downs, there are plenty of other rare but possible things that can go wrong, some of which won’t show on any test. It’s no guarantee of anything. Pregnancy is a time of joy but also natural worries. Why add to them, is my opinion.

The odds are in your favour here. Your odds might be a bit higher than other women’s but there’ll be those who have a much higher risk than you. I was very high risk but my DC doesn’t have Downs. Only you can decide how to proceed, but don’t let this risk figure get to you xx

You don't teach a Down's girl, you teach a girl with Down's. Language is incredibly important, especially from those responsible for educating children and teaching them inclusivity, acceptance and tolerance.

OP I'm sorry you've had a worrying result but it's still statistically far more likely that your baby doesn't have Down's syndrome. I hope whatever route you take from this point you can find peace and reassurance.

I always thought I couldn't deal with a d s baby. I work as a teaching assistant and support a d s girl in secondary school. She is an absolute delight, and although it would be so hard I would totally do it now. She is gorgeous.

I really hope you are OK,whatever happens for you. 😘

I don't have a positive story to add, but I wanted to say that I'm sorry you're going through all this. It's awful. I don't know if stories are helpful, as statistically, as others have said, people do have healthy babies with those odds, but of course some don't. If I could tell you one thing, it would be that for me, information was key. Chromosomal abnormalities are various, and sometimes children with them also have numerous other health issues. Well intentioned people may say that they know so and so who was born with such and such and is a delight and so on, which is great. But the label is just the start. Should you get bad news, you need to know the extent. Some are very life limiting and knowledge, in the best case scenario, lets your baby get the best and earliest treatment.

I am glad it worked out for you, but you are wrong to say that it is proof of anything. 1/4 means just that.