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Old Jan 18th, 2018, 11:14 AM   11
Bonnie11
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I would absolutely have the harmony test to set your mind at ease. Then at least you can make an informed decision having all the information and you will also be offered counselling. At the moment you are just dealing with what if's and it's hard to do that when it's such an emotional subject xx



 
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Old Jan 18th, 2018, 12:17 PM   12
Witchrose
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Originally Posted by Bonnie11 View Post
I would absolutely have the harmony test to set your mind at ease. Then at least you can make an informed decision having all the information and you will also be offered counselling. At the moment you are just dealing with what if's and it's hard to do that when it's such an emotional subject xx
Yes, this. I received a 1 in 29 chance, and it turned out my son does not have DS. And was a totally healthy baby in every way. So if I were OP, I wouldn't make any big decisions without knowing for certain.

You are certainly no monster, and all your feelings/reasons are valid. No one else has to walk in your shoes, or can know what is right for you and your family.

Whatever answer you receive, and whatever you decide to do... I hope you get tons of love and support.



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Old Jan 18th, 2018, 12:23 PM   13
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Your odds are still very very low - hold on to that.

I know the test is expensive, but I would scrimp and save and do it. I think it is worth your peace of mind to make a decision knowing as much information as possible



 
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Old Jan 18th, 2018, 12:46 PM   14
kcmb0886
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1 in 95 is only a little over 1% chance of Down Syndrome. There’s about a 98.9% chance of no Down Syndrome. It’s still very unlikely. I realize when we hear that there’s any risk, it can be terrifying. But, the standard blood work that is done at ~12 weeks is known to give falsely increased risk assessments, and without an accurate ultrasound or NT measurement, the blood work is even less accurate. When I went for my 12 week testing, I was told my baby’s NT was thicker than they’d like to see and then I was told that he had a 20% chance of having any chromosome abnormality, cardiac problem, or genetic syndrome. They wouldn’t even send me for the regular blood work. I was terrified and I cried for days. I was able to have the NIPT (Maternit21) which came back low risk. So I was seen for an early anatomy ultrasound at 15 weeks which was reassuring and then they’ll send me for another one in a couple of weeks. Is your doctor able to see you for an early anatomy ultrasound just to make sure everything is developing properly (ie heart, kidneys, bladder, brain)? They wouldn’t be able to measure the NT at the anatomy scan, but knowing whether everything else is looking alright might ease your fears. I’m sorry you’re going through this.



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Old Jan 18th, 2018, 12:49 PM   15
kitty_el
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I would be querying how they can give you a combined score of 1 in 95 without an NT measurement. I have never heard of that ever... my baby was in an awkward position and they said I had to come back and they would finish the scan at another time. That just makes no sense...

I can understand your concern, but as others have said 1/95 is still not that high. If it was me I think I would pay for the Harmony or maybe have a private scan to look for markers etc.



 
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Old Jan 18th, 2018, 15:03 PM   16
Sander
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Maybe you can get some help from family and friends to pay for the harmony test? If everyone chips in a 20 it could help with the cost.

1 in 95 is still pretty low - as another poster mentioned it's just under 99% chance that you have a perfectly healthy baby. Also something my midwife told me is that your odds are calculated by the number of children you have, not 1 in 95 people. Like a 1 in 95 chance means if you were to have 95 children, 1 might have chromosomal abnormalities.

I know it's very scary, but just remember the odds are in you and your baby's favor for a healthy child

Hopefully you can get more conclusive answers soon!



 
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Old Jan 19th, 2018, 01:12 AM   17
lilmisscaviar
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I believe there was another girl on here not too long ago that was in the same situation because she also had a high risk of DS. If it matters to you whether to continue on or not, I'd definitely go for the Harmony test since it is 99% accurate with DS. It IS an outrageous cost, but then so is termination. At barely over 1% odds, it doesn't seem too likely that your baby will have it, but you don't want the doubt hanging like a cloud over you the rest of your pregnancy.

Also I'd definitely be pushing for another NT scan to retake those neck measurements. I think it is horrible that they basically told you it would be pointless when they couldn't even see for sure. If that comes back ok, then you might be able to forego the Harmony test.



 
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Old Jan 19th, 2018, 04:34 AM   18
sam3starxx
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Quote:
Originally Posted by Witchrose View Post
Quote:
Originally Posted by Bonnie11 View Post
I would absolutely have the harmony test to set your mind at ease. Then at least you can make an informed decision having all the information and you will also be offered counselling. At the moment you are just dealing with what if's and it's hard to do that when it's such an emotional subject xx
Yes, this. I received a 1 in 29 chance, and it turned out my son does not have DS. And was a totally healthy baby in every way. So if I were OP, I wouldn't make any big decisions without knowing for certain.

You are certainly no monster, and all your feelings/reasons are valid. No one else has to walk in your shoes, or can know what is right for you and your family.

Whatever answer you receive, and whatever you decide to do... I hope you get tons of love and support.

Thank you really needed to hear that I just feel guilty. Thank you again xx



 
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Old Jan 19th, 2018, 04:35 AM   19
sam3starxx
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Thank you ladies for all your stories and advice.
Phoned the hospital this morning and they refused to scan me again unless i pay and said it would not help as it would not confirm anything. They said even if they could see the neck and nose this time it would mean nothing.

So i have paid for the harmony test, i have it tomorrow morning and get my results in 6 days.

Fingers crossed.

Thanks again for your kind words. Yesterday was an emotional day and hormones do not help! Feel calmer today xx



 
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Old Jan 19th, 2018, 04:47 AM   20
glong88
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Wow that's really harsh. What hospital was that??

Keep us updated with the results xx



 
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