Test for down syndrome

[Arnie18]

Has anybody had the test for Down syndrome and come back high risk??? They said there is a one in 62% chance of my baby having it I’m 14 weeks my hcg levels were slightly higher worried sick has anybody paid to have the private blood test?

Kate Xxx

[SConnor]

Mine came back low risk but even so we did it. Silly reason, all the pregnant ladies in my office were doing it and they also check for other chromosomal abnormalities. I would recommend you and your partner have a conversation about it before deciding to test or test further... some friends had a high risk and then this other test came back negative, I guess mostly because of their age around 40 the risk was high...

So sorry you are in this situation, I hope everything will be fine.

[Arnie18 in reply to SConnor]

Thanks I’m 37 did you have the private test and Is that a blood test ?Xx

[SConnor in reply to Arnie18]

Yes I had the private test, it is a blood test. They can get the baby’s dna from your blood and do a chromosomal analysis. Did your consultant mention another possible test not private to explore this further?

[Arnie18 in reply to SConnor]

Yes amniocentesis but there is a slight chance of miscarriage with that and I don’t want to take that risk x

[Arnie18]

How much did it cost you for private test if you don’t mind me asking?x

[laurafig in reply to Arnie18]

We had the blood test for other reasons and the lady at the private clinic said that many women go to have a private blood test anyway as it’s 99.9% accurate compared to the 80% at the NHS. She said most of the time it all comes back fine anyway. We paid £350 and did get a proper scan and photos etc. The private midwife was really thorough and had a lot more time than the NHS appointments. I’d 💯 recommend it.

[Arnie18 in reply to laurafig]

Thanks Laura will look in to going private Xx

[SConnor in reply to Arnie18]

I paid something similar, around 400 pounds

[Emilylouise-]

Hi we had a 1 in 131 high risk that baby has downs we were give 3 choices pay the £500 for the harmony test carry on with pregnancy or to terminate him

We chose to carry on as regardless as to if he does have downs we will love him the nhs test is only 75% accurate and it's based on age location smoking status and number of previous pregnancy x

[ChrisWest1983 in reply to Emilylouise-]

I agree - age plays such a big role in this test. When I was pregnant at 34 years old age it did not play such meaningful role,but now being 36 years old my score for age alone is 1:299 dragging all numbers down . Thank god that overall the score such as neck thickness etc evened the number out and I am in low risk.

[Arnie18 in reply to Emilylouise-]

I’m having the NIPT test done privately through the Nhs it’s 98% accurate costing me £390 well worth the money X

[jessyjessy572]

Would defiantly recommend the privite blood test, even if it won’t change the outcome it will give you better assurance. I had a family member who had also got initial result as high risk and decided to do invasive test (this test has a miscarriage risk) the 2 test come back low risk and she gave birth to perfectly healthy baby. Also don’t forget the test give you level of risk it doesn’t confirm anything for sure. For us the privite test was know so we were prepared as it would not terminate either way however if you would consider this option ( I don’t judge it is everyone’s personal decision) it is better to know sooner then later. Good luck hope all will end up being just incorrect scoring.

[Noobs]

I paid for the private harmony test which I think was £400. At 42 I was really worried about the risks so this test was worth every penny. Whilst only the amino can give you a yes/no result, the harmony test came back at 1/10,000 which is a very low risk. You also get a scan and can find out the sex at this stage if you want. Xx

[Mali-jay]

I think it depends on whether or not you would cope if baby has Downs, Personally I think people with Downs can and do live perfectly happy normal lives. And aren't too much different from having children without disabilities.

I worked in a SEND school and 90% of the kids with Downs went on to independent living and have jobs and partners and happy lives.

I think what i'm saying is don't let a chance of Downs scare you too much.

[Georgielouise]

I am 42 and opted not to have it this time around. Reason is I would want to keep my baby whatever the result. If the blood tests come back high then they will want to do further tests which can cause a miscarriage and I wasn't going to risk that as went through a lot with IVF to get pregnant. Did you have the test where they take the fluid?

[Arnie18 in reply to Georgielouise]

No not decided what to do as of yet thinking of paying for private blood test x

[Georgielouise in reply to Arnie18]

OK, I think the test where they take the fluid from the sac is a risk. Maybe private blood tests would be good for you, its a worry as we all want a healthy baby , I hope all goes well for you.

[charlcharl123]

Sorry - I know this is a sensitive issue but in 2019 I don't really see why we should be making decisions about a baby whether it has downs or not. this article explores the issue quite well.

theguardian.com/commentisfr...

Really hope I don't offend but it just seems time we move away from the pre screening of babies for downs as a preventative measure.

[Kempton in reply to charlcharl123]

I don't think that's what the original poster was asking. It's very easy for someone to state that they don't think having a downs baby is a big deal in 2019 but you don't know the original poster's circumstances or previous history. It's great you know how you'd deal with this situation were you in it, but I don't think your comment is helpful.

[charlcharl123 in reply to Kempton]

It’s never not helpful to be pro downs babies. Regardless of history nothing about my comment was insensitive.

The test for downs shouldn’t even be a thing.

[kt_11 in reply to Kempton]

Agreed. In addition to this, although Down Syndrome is perhaps more well-known, this combined test is actually for several syndromes and also includes Edward’s and Patau’s. These are extremely serious conditions which generally (not always) are not compatible with life and most babies with these conditions pass away either before or shortly after birth.

Of course it’s a sensitive issue but it’s important that people are informed to make the right decisions for them. Whilst personally there would have been absolutely no chance of me terminating a pregnancy with a baby because they have Down Syndrome, I wasn’t as sure about if he’d had one of the other conditions. I might still have chosen to continue but I do think it’s potentially a different situation. To be fair I think you can ask for them separately so you could just test for the more serious ones if you wanted but it’s the combined one that’s generally offered.

And I actually think I’d want to know if my baby was going to have Down Syndrome before they were born as I’d be able to prepare myself for that and the potential that they may have some of the health conditions that can sometimes beassociated. x

[Kempton in reply to kt_11]

Agreed. It might be possible to give a child with Downs a great life, but that's not the case for Edwards and Pataus. I also still think people should not be made to feel bad for the personal decision. I'd rather someone terminate a pregnancy than a child have a potentially awful life of neglect or a parent struggle and not enjoy any moment of parenthood.

[Arnie18]

I would like to no so I can be prepared not sure that I would cope well and so the options would be there for me also it’s peace of mind the money is well worth it and i think I will be getting the private harmony test.Each to there own there isn’t a wrong answer

[Cedrada]

Went straight for cvs sampling with the nhs. Best decision I ever made.

[Arnie18]

I’m paying for the private blood test I’m getting it done tomorrow so fingers crossed all ok 🤞

[Flibbertigibbet]

Hi Kate, Firstly Congratulations!! please don't be worried. If your child has Trisomy 21 (Down's Syndrome) there is a wonderful life ahead of you should you chose it. I chose not to have the test as I was low risk with my 4 year old & thought not much had changed. Max is now 2 & as no major health issues were flagged up on the scans we were unaware of his Learning Disability (Downs Syndrome) until he was born. I was shocked ro learn that the majority of mothers with children who have Trisomy 21 are young mums! It's normally just something that happens at conception and Dr's still don't really Know why!

Please have a look at positiveAboutDownSyndrome.c...

Do feel free to get in touch if you would like an impartial chat. Cristina. xxx

[Arnie18 in reply to Flibbertigibbet]

Hi Cristina,thanks for your reply I’ve had the text and it came back low risk.We found out the sex it’s a little boy I’m 19 weeks now it was a worrying time for us it was because my hormone was slightly highly than normal hope your little boy is doing good take care

Kate Xxx