Harmony screening positive and now having amnio-feel desperately sad.

[Ashworcl40]

I am 16 weeks pregnant with our third child. We came back high risk on the NHS screening (1 in 75) and went on to do the Harmony test - which we told ourselves would come out negative because a risk of 1.3% is really low. The Harmony came back as positive for DS. We went on to have an amnio which we are waiting for the results of. We hear that the Harmony test is 99.9% accurate but I can't stop my brain insisting that i'm the 0.01% who has a false positive.

I know some people feel very strongly about having or not having a child with DS - my husband and I have friends and relatives with children who have DS and had made a conscious decision this wouldn't work for us and our family.

I feel such a mess. I feel guilty for the decision I know I'll make if it confirms the DS but I know it is absolutely without question the right thing for us - I feel an idiot for giving myself hope in a hopeless situation but can't stop googling for hope - and I am desperate to have this child healthy. I'm up and down, crying constantly and just don't know how to get through this. I have really supportive friends and family, especially my amazing husband..... but I just can't believe this is happening. I just want to sit in a dark room on my own and disappear.

If anyone else out there sees this post and has gone through this, do you have any words of advice or comfort?

I haven't gone through it but I read your post and just wanted to offer some support.

I had the Harmony test with both my most recent pregnancies for the very reason that I knew that a child with DS would bring considerable challenges to our existing family. Please don't feel guilty for making the decision you know is right for you.

As you've said, Harmony is a screening test and not diagnostic and there is still hope until the results of the amnio come back. Of course you are going to cling to that hope, everyone would.

I will join you in hoping for the best. for you OP, I expect the next few days will be desperately hard while you await the results, I hope you can find enough distraction to get through them. Glad to hear you have lots of RL support.

No personal experience but just wanted to say sorry that you are going through this. I know how horrible the waiting us. We were recalled following the combined tests, I cried for the whole week until the appointment.

You need to make the decision that is right for you and your family, don't be swayed by what others have done/ say they'd do.

Didn't have the harmony but have a tfmr for t21. It was the hardest time of our lives, so awful. I would speak to ARC
www.arc-uk.org
They are amazing. I'm so sorry x

Wishing you the best OP, I agree that you have to make the decision that U.S. Best for you and your family x

Everyone has an opinion but in reality, no one knows what they would do unless they are actually faced with a positive test. I always insisted I would never have invasive testing but on receiving a 1:2 chance of down's I immediately changed my mind. No one can say how they will react until faced it. You will do what's best for your family & although it will be heartbreaking for you, please don't feel guilty.
How long do you have to wait for the test results?

Don't feel bad at all.

I'm pregnant with number 3, with our first we didn't bother with the 12week tests but with our 2nd and 3rd we have, with number two it was to prepare our first if the baby did have downs, with our 3rd it was because our family as it stands sadly a baby with all the additional needs would not work along side our family. Obviously there is still the risk that the baby may have something else wrong but for us if tests showed a positive downs result we would of done the same as what your plans are.

How long till you get your results? Some NHS trusts are very fast our original testing and posted results where back within 3 days and ours don't do in house so it gets sent out.

I'm sorry to hear your 1:2 result... I don't know about you but for me it was an absolute shock. We hear on Wednesday so it's a 4 day wait in total but only because of the weekend in between. When do you hear?

You've all been so kind and understanding.... Thank you for your words of comfort.... :-)

I had a positive harmony test in 2013 and felt exactly the same as you, I was googling false positive rates and trying to convince myself it would all be fine. The consultant said a false positive was extremely unlikely indeed but still I hoped, but unfortunately the CVs results were also positive for T21 and I had TFMR. I really hope the results are proven wrong but please try and prepare for the worst. If it is bad news, you will get through it and come out the other side. I've had two healthy babies since my TFMR in 2013.

What got me through was the antenatal tests and choices topic here on Mumsnet, have you looked and posted there yet? Others who had been through it and also happy to share practical info and their emotions, I couldn't have coped without them. A very dark time but I have survived.

Arc were also good as previous poster mentioned.

Good luck I hope it's good news. Feel free to post questions/pm me.

Blacktreaclecat and AliBingo - thanks for the arc details, I've looked at their site and will give them a call on Monday.

AliBingo - thanks for sharing your story. What is a TFMR? Im so happy to hear your good news after this event - 2 babies, wow :-)

I'm new to mumsnet, I was desperately searching for people to talk to (my husband and I have not had the courage to tell the truth to all those close to us in case they or friends judge us for the decision we're ready to make).... could you let me know how to find the antenatal tests and how to PM you :-)

I am so glad I found you all on here.

I can't add anything practical to the wise words that have already been said, but just wanted to say I am really sad that you are having to go through this and thinking of you. All the very best with the testing and any decisions you have to make. There should be an icon for crossed fingers or a 4 leaf clover!

TFMR - termination for medical reasons. Stay strong OP.

Quick reply as on phone.

The board is at

www.mumsnet.com/Talk/antenatal_tests_choices

Example threads

www.mumsnet.com/Talk/antenatal_tests_choices/904964-Termination-after-CVS-results

www.mumsnet.com/Talk/antenatal_tests_choices/1252638-Trying-again-after-termination-and-age-40

www.mumsnet.com/Talk/pregnancy/2040171-Anyone-else-pregnant-again-after-termination-for-trisomy

There are loads of others, I read loads of old threads when I went through this.

Oh we also told nobody in real life, my GP was good though.

Will reply better later when not holding the baby.

Thinking of you OP
I hope you got the result you wanted, and if not, have all the support you need.

All I can add is that I'm thinking of you too. You have to make the right decision for you and I wish you all the very best in whatever that is.