Just had a phone call to say I have a 1:50 chance of having a baby with downs syndrome

[cece]

Midwife has bombarded me with extra tests I can have but feeling a bit shocked. Not sure what to do? Anyone had something similar who can share their stories please?

Consultant was lovely. He said he has done over 700 amnios and never had a mc yet. But he siad obviously there will be one at some point...

He also said I could have it later in pregnancy so don't necessarily have to have it done at 16 weeks. Although he said the only thing we need to decide pretty quickly is whether we would terminate as he said after 22 weeks it is unpleasant for patient and staff alike.

He also said that for me opting for just the 22 week scan and no other tests was a choice he understood. He felt that because the nuchal fold measurement was average then the chances of heart problems were low.

So now DH and I just have to decide...

Oh Cece, that must have been a hard appointment.
I'm not sure if I follow when you say to just opt for the 22 week scan, etc. Does that mean if you don't go for the amnio and just wait and see what the 22 week scan shows? Can they not scan any earlier to get a more accurate result? Have you thought any more about a more detailed scan, may put your mind at rest, can't imagine waiting until 22 weeks but that's just me.
I hope you and your husband are bearing up, wishing you luck x

I just wanted to offer my experience - my sister was given a 1:30 chance and didn't have any further tests as she didn't want to terminate.

My nephew was born with DS. With hindsight, my sister says she wished she'd had a definitive 'yes or no' as the shock was immense when he was born - not just for her and her DH but the whole family. If she'd known, she could have prepared herself and those around her.

He's a fantastic kids BTW, no heart problems or anything and has just started mainstream school full time.

HTH xxx

Hi cece,
I would echo Janus's post - can you get your hospital to arrange an earlier detailed scan for you? I had one at 17 weeks (with the normal anomaly scan at 21) and the consultant looked for markers for DS, etc which thankfully was all clear. Another scan avoids the 'all or nothing' type approach, I think, where you have an amnio without knowing much or you don't do anything at all. With an extra scan, at least you'd know if there are any markers and then you could decide on an amnio or not armed with more info.

Did you find out what was high/low re the blood test results by the way?

I know how difficult this all is. Hope you're bearing up the best you can.
All the best x

violeta - I did find out my actual levels for my blood tests but the consultant said not to pay too much attention to the actual figures (such as were they higher or lower) as the risk is then calculated using a very complicated formula. Taking into account age and al the test results.

Janus - I did ask about another detailed scan looking for markers. He said it is possible but didn't recommend it as it only gives a risk (like this result) not an actual answer.

He said the midwife would call me in a bout a week to see how we were getting on and if I wanted to see him or a midwife again to just call.

I have been quite impressed with the care they have shown tbh.

When our child had 2 markers at the 20 week scan we were scanned weekly. Can you ask for that?

There are a range of experiences on here and it's probably not helping you make a decision (and in a way, so it shouldn't - only you will know what you want to do).

But just to let you know what happened to me - I had a normal nuchal test but insisted on an amnio against medical advice (just had a strong need for 100% certainty). Amnio came back positive for downs.

Next time I had CVS at twelve weeks. Both procedures were simple and I would happily take them again.

I needed to know. If you need to know, I would suggest the amnio (it's not as bad as people think). If you don't need to know, then your decision is made right there.

best wishes for this difficult time.

HI,

know what you are going through, we've been going through the same thing this week. we were given a 1:60 risk of downs and were given a emg scan the next day. unfortunately my scans have been very poor so far and the consultant had quite a hard time getting a good picture but the soft markers all came up okay. but as i was told some downs babies have 'normal' scans. we are having our 20 wks scan in 2 wks and will see what happens then - hopefully as baby has grown it will mean a better scan picture.

hubby says it doesnt matter as we've decided we're having this baby no matter but i'd still like to knoweither way. will decide later on if we have an amnio - it can be done at any time throughout your pregnancy - even in last few weeks according to my consultant. so if we do go for it then we are going to leave to much later on then if it causes any probs baby will have a fighting chance if he needs to be delivered early.

If it was me i'd push for 20 wks scan, just means you could still ask for the 22wks scan if like me the picture is not great quality

no matter waht you decide good luck. let us know how you get on

thanks for the messages.

positive what is an emg scan?
Unfortuantely I don't think a 20 week scan is possible as it is christmas that week. I have a 22 week scan booked for 9th Jan

hi cece

sorry emg - emergency - dont think that when mw phoned she realised what she was saying - you worry enough when things are going fine and then your told you have to have an 'emgergency' scan - didnt sleep the night before as you can imagine

Hi, i had my double test marker results today, and i was shocked that i have a high risk chance of having a Down syndrome baby. 1 in 50 chance. Does anyone have the same results? Please share with me. I don't know what to do. I feel anxious and stress 😣

Hi, Do i know how is your baby today? I have the same situation im 13 weeks pregnant now, i feel anxious and stress

I'm sorry you're going through this stress, it's a worrying time. I was given the same odds for DS. A harmony test showed much lower odds and DS is now a healthy 3 year old

Hi @No3 this thread is very old so you might do better starting your own thread? Things have changed a fair bit in the time since this was posted. Have you been told about the NIPT blood test? It can tell you to 99% accuracy with just a blood test from you. Some places only offer it privately. Sending you lots of support, you must be very anxious.

@No3 the harmony test mentioned by @Juancornetto is the NIPT test x

Have the NIPT test and an amnio for certainty 😘

@No3 this thread is from 2007 so a lot of the advice may have changed. You would be better to s tart your own thread asking for advice as your message will get lost in a sea of Zombie Thread posts soon.

I had my 3rd dc at 45 and opted for no screening tests as I knew my risk would be horrendously high, and although I am pro choice, I knew that I wouldn’t want a termination. So there was no point in worrying. Dc was/is fine. Hope everything goes well for you, op.

Hi OP, I was told I had a 1:50 chance of having a baby with DS. I asked why and was told it was because of my age, I was also 40. I declined all testing as MW told me my age is the first thing inputted when going through the tests and I said it will come high because of that anyway so what's the point.

The reason I declined was because the outcome made no difference to how I felt and I enjoyed the rest of my pregnancy. I obviously read up and learnt what I could about DS to prepare myself. My baby was born with no problems and did not have DS.

Remmeber these are just indicators, not a given fact.

Do what is right for you and try not to let yourself be bullied into having tests you don't want x

ZOMBIE THREAD

If the OP had her baby, they would 15yo now!!

When i pregnant with my first the midwife said i got 1:20 child with down syndrome. She offer me the continuous test but the side effect can be miscarriage. So i dont take it. I was so stressful until the end of my pregnancy. And my boy arrived. He was a perfect little baby. Not downsyndrome.

with my second pregnancy i decided not to do Down syndrome test. My second boy born perfect aswell.

Hi, thank you for your positive response, though we are not sure how accurate the test is we still hoping and praying for the positive outcome. Me and my partner ready to accept anything, when the time we knew the results we got home so quiet, he let me think and relax, I know he felt the same thing but he still think positive, He comfort me, that time i cried so hard when i heard from him " if its true it's okey, that is my child and i will be a good father for him/her for the rest of my life, i will not abandon him/her, I will support him/her all the way", actually im 32 and this our first child that's why we really feel upset, though the result doesn't mean our unborn baby has a Ds but as a parents we always want the best for our child, I refused to do another test, I just want to enjoy my pregnancy and be healthy and happy these will be the best for my unborn baby. I continue taking vitamins from the time I knew I was pregnant. And my partner always prepared a healthy juices and food for us. I'm still thankful to have a supportive partner and i know he will be a good father. Like a good partner with me. 🙏🏻🙏🏻🙏🏻 Prayers is the best answer to all worries. With God nothing is impossible. I let God guide my pregnancy. Thank you all for your response that gives me hope.