Gutted and don’t know what to do

[Loulou04]

I’m absolutely gutted the hospital phoned me today about my screening results and I’ve been given a 1:91 chance of baby having Down’s syndrome, I’ve been offered further tests but obviously there’s a risk of miscarriage, they could also do a private blood test NIPT which is non invasive but that’s £329!!! I really don’t know what to do, anyone else have similar odds?

 

[HLx]

Sorry to hear this hun no advice for you, I had my screening tests done 3 weeks ago now and still haven't heard anything back, they used to send a letter but I think its changed now...

1:91 doesn't necessarily mean your baby will have it hun, but it's your choice whether you decide to have more tests or to just carry on without knowing. Hope your okay!

 

[Loulou04]

Thank you it’s all been a bit of a shock, I think in the grand scheme of things that if the test at 16 weeks came back as definite or very high chance I wouldn’t be prepared to terminate the pregnancy at that stage in pregnancy so probably the best thing to do is hope for the best outcome but prepare myself for the chance of Down’s syndrome. I mean it’s just over a fraction of 1% which is still quite slim. I only had test yesterday so yours will definitely be low risk otherwise you would’ve heard by now x

 

[HLx]

Thank you it’s all been a bit of a shock, I think in the grand scheme of things that if the test at 16 weeks came back as definite or very high chance I wouldn’t be prepared to terminate the pregnancy at that stage in pregnancy so probably the best thing to do is hope for the best outcome but prepare myself for the chance of Down’s syndrome. I mean it’s just over a fraction of 1% which is still quite slim. I only had test yesterday so yours will definitely be low risk otherwise you would’ve heard by now x

I understand hun, the initial shock must have been awful, but like you said the chance is still very slim!

On a more positive note, a good friend of mine has a little boy with DS, hes 10 now and an absolute cracker of a boy, such a sweetheart I'm completely in love with him, hes very intelligent and has never fallen behind in anything hes so well behaved and pleasant to be around, honestly you would never think he even has the condition! I think the support for DS is the best it's ever been these days, kids are kinder, people are kinder and the support is phenomenal.

Sorry I'm not of much support, but I'll be here if you need me x

 

[Loulou04]

I understand hun, the initial shock must have been awful, but like you said the chance is still very slim!

On a more positive note, a good friend of mine has a little boy with DS, hes 10 now and an absolute cracker of a boy, such a sweetheart I'm completely in love with him, hes very intelligent and has never fallen behind in anything hes so well behaved and pleasant to be around, honestly you would never think he even has the condition! I think the support for DS is the best it's ever been these days, kids are kinder, people are kinder and the support is phenomenal.

Sorry I'm not of much support, but I'll be here if you need me x

Thank you so much, means a lot hun x

 

[Suggerhoney]

I'm sorry to hear this hon
Theres a lady who was told that her baby probably has DS and she got a really high risk result but when she was born she didnt have it at all. Did they do the combination screen as in the scan and bloodtest?

My step brother has DS and he is so lovely and so cute I love him to bits and he always makes me laugh.

Sorry u have had bad news. Thinking of you

 

[Loulou04]

I'm sorry to hear this hon
Theres a lady who was told that her baby probably has DS and she got a really high risk result but when she was born she didnt have it at all. Did they do the combination screen as in the scan and bloodtest?

My step brother has DS and he is so lovely and so cute I love him to bits and he always makes me laugh.

Sorry u have had bad news. Thinking of you

Thank you Hun, yeah the neck measured 2.8 and they said was in normal range but my bloods came back higher risk. To be honest I was quite shocked but I’ve calmed down a bit now. What will be will be, it’s out of my hands and whatever happens we will love our baby x

 

[Sander]

My midwife told me those odds are calculated on your personal children - not the general population. As in, it’s not that you could be one of 91 people to have a baby with DS, but if you deliver 91 children, odds are 1 would have DS. So the odds are still relatively low as I’m assuming you’re not planning on 91 kids

Anyhow I’m sure it’s still unexpected and frightening news. The previous posters are right that there is so much support and love for those with DS nowadays, and many kids still function remarkably well even with the condition.

That being said, I’d be willing to bet that you will have a typical child

Hugs to you wishing you all the best

 

[Scout]

Not sure if this is really helpful, but when I was pregnant with daughter, my odds were 1:11. I opted for the materniT21 blood test bc I didn't want to risk miscarriage with an amnio(although I think it's a small risk only) as I wanted the baby no matter. Test came back with typical chromosomes. I didn't have to pay that much, though, but I think I would have to get an answer. I'm a bit of a control freak and have a need to know, good or bad. I wish you the best

 

[Loulou04]

Not sure if this is really helpful, but when I was pregnant with daughter, my odds were 1:11. I opted for the materniT21 blood test bc I didn't want to risk miscarriage with an amnio(although I think it's a small risk only) as I wanted the baby no matter. Test came back with typical chromosomes. I didn't have to pay that much, though, but I think I would have to get an answer. I'm a bit of a control freak and have a need to know, good or bad. I wish you the best

Thank you, I kind of do want to know but at same time don’t want to risk miscarriage I’m pretty sure the 20 week scan will be able to tell us properly, I have been offered NIPT but it’s £329 and if it comes back high risk I’ll still need to go for the Amniocentesis to get a definite answer so I don’t really see the point in spending all that money to maybe be back at square 1 again x

 

[Loulou04]

Not sure if this is really helpful, but when I was pregnant with daughter, my odds were 1:11. I opted for the materniT21 blood test bc I didn't want to risk miscarriage with an amnio(although I think it's a small risk only) as I wanted the baby no matter. Test came back with typical chromosomes. I didn't have to pay that much, though, but I think I would have to get an answer. I'm a bit of a control freak and have a need to know, good or bad. I wish you the best

My midwife told me those odds are calculated on your personal children - not the general population. As in, it’s not that you could be one of 91 people to have a baby with DS, but if you deliver 91 children, odds are 1 would have DS. So the odds are still relatively low as I’m assuming you’re not planning on 91 kids

Anyhow I’m sure it’s still unexpected and frightening news. The previous posters are right that there is so much support and love for those with DS nowadays, and many kids still function remarkably well even with the condition.

That being said, I’d be willing to bet that you will have a typical child

Hugs to you wishing you all the best

Thank you Hun, definitely not planning on 91 children lol, this is my last! Your post has made me feel a lot better so thank you x