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Support for High Risk NT Results #45


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#26 melanieb530

Posted 28 January 2015 - 01:03 AM

Ted, we have a fabulously delightful 5 year old with Down Syndrome. To us she is perfect just as she is and we wouldn't trade her for anything.

Good Luck with everything!

#27 Green lady

Posted 30 January 2015 - 05:42 PM

Indigo 89

I hope you got some favourable blood results.

#28 Indigo89

Posted 30 January 2015 - 08:58 PM

Hi GreenLady, and everyone.

Nope. I didn't actually get to see my bloods, or anything really, there was alot of chasing up and stuff ups from every organisation involved.
I was given 1 in 2.
Not sure for what specifically but assuming downs.
Had the CVS yesterday. It was one of the hardest things I've ever done, I was not prepared for the pain.
10 day wait for the results, but everyone I've spoken to, especially the lady who did the CVS, is sure it will have a Downs Result. And if it isn't, there is something else seriously wrong. (10mm measurement extends all the way down to baby's bottom)

We have already decided to Terminate. (I know there will be haters, but It's our decision)

How do you sit here for 3 weeks knowing that you are going to end the life of the baby which is still growing and kicking in your womb? It's excrutiating.

How do you move on to TTC again?

#29 Green lady

Posted 30 January 2015 - 09:23 PM

Indigo89 - I also had 1:2. I wasn't the 1 but wished for it as I wanted something definitive which would have given me a basis for a decision . You are right the whole experience is excruciating. I was told at 19 weeks that the outcome would be good. I knew it wouldn't be and that feeling was right. The potential uncertainty of what could be wrong is awful and I completely empathise with a decision to terminate. You will TTC again when you feel ready. I thought at the time that I'd never get pregnant again but that feeling passed after a few months and then I started to think about it. Unfortunately the innocence and enjoyment of pregnancy is probably gone for you. However when I got pregnant a year later I was actually quite calm as I had such low expectations of it progressing. If you have low expectations your disappointment is less when it fails. It all seems awful now but you will recover. You are young ( I was 36) and so this is just unfortunately really bad luck for you. Support and reading forums like this one helped me to know I wasn't the only one - as you can see 6 years later I am still reading this forum.

#30 Indigo89

Posted 31 January 2015 - 06:26 AM

Thank you.  And thank you for your swift response.  X

#31 ecoomer

Posted 31 January 2015 - 06:37 PM

I am 12 weeks 4 days and cvs confirms baby boy with DS... We are devastated. Glad to have found this forum just to not feel so alone

#32 Jacksmummy4

Posted 01 February 2015 - 08:45 AM

Indigo89, I am so very sorry to hear of your situation. It's horrible that they have already said to you that if the baby doesn't have DS then there will be something else terribly wrong. I think they should wait till a definite diagnosis before they even say anything like that!

You need to make the decision that is best for you and your partner. No one should judge. No one is walking in your shoes and we also said, if our daughters results were severe, we would also terminate. People don't realise that caring for a child with a disability is not just a part time thing. It's 100% all the time. No breaks, no...I'll just drop them off at daycare so I can have a day a week to myself. It doesn't work like that. And allot of the time other relationships are strained because of it. In the end we continued and while our daughter has her challenges, she is no where near as bad as they made out to be :)

I also wondered how I was going to terminate when I could still feel her kicking. I would cry and stay to my stomach please stop so I don't have to endure this! You will be offered a ton of additional support with counciling etc. And one day...when your are ready, your angel will come back to you healthy and ready to come into the world. xxxxxx

Ecoomer, I'm sorry to hear of your result. Are you going to continue? xxxx

#33 little_bug

Posted 01 February 2015 - 04:32 PM

Indigo89 I'm so sorry to hear things aren't looking good. I also had a 1:2 risk and unfortunately I was the one and my husband and I made the decision to end the pregnancy. I have an idea of how you are feeling right now waiting for a definitive diagnosis, it's just torture.  I really hope that things work out ok but if not and you do decide to terminate, you will be ok. It is not easy by any means and you will have some very difficult times, but with time you will start to feel better and with time may want to ttc again. I'm nearly 10 months out and still struggle with what happened,  but I don't regret our decision, it was right for our family and individual circumstances. Just make sure you use the time you have before receiving your results to thoroughly research your options and become as informed as possible. Send me a message if you have any questions you'd like to ask privately xx

Ecoomer, I'm so sorry to hear. Thinking of you xx

#34 bees-knees

Posted 01 February 2015 - 05:06 PM

View Postecoomer, on 31 January 2015 - 06:37 PM, said:

I am 12 weeks 4 days and cvs confirms baby boy with DS... We are devastated. Glad to have found this forum just to not feel so alone

ecoomer, congratulations on your pregnancy. I have a 5yo with Ds, and if I can answer any questions, or if you'd likr me put you in touch with someone you can meet with in your local area, please PM me.

#35 ecoomer

Posted 05 February 2015 - 11:07 AM

we have met with the genetic counsellor and spoken with our family and only close friends. We've consulted our family GP, two obstetricians and a psychologist. We have reached a heartbreaking decision... Have the utmost respect for those with children with special needs but given the fact they can not tell us what form (mild or severe) our DS child would have we can not go on.

#36 born.a.girl

Posted 05 February 2015 - 11:34 AM

View Postecoomer, on 05 February 2015 - 11:07 AM, said:

we have met with the genetic counsellor and spoken with our family and only close friends. We've consulted our family GP, two obstetricians and a psychologist. We have reached a heartbreaking decision... Have the utmost respect for those with children with special needs but given the fact they can not tell us what form (mild or severe) our DS child would have we can not go on.

I hope you get all the support that's possible.

I wanted to 'like' your post as a show of support, but 'like' didn't seem appropriate.

#37 Green lady

Posted 05 February 2015 - 06:12 PM

Ecoomer

I hope you recover quickly mentally and physically. Take comfort in the fact you have made an informed decision and the right decision for you as a family.

Indigo 89

I hope you are going ok.

#38 SpeedBump

Posted 01 March 2015 - 09:04 AM

Wondering if this group is still active?

I'm 13 weeks 4 days pregnant (my baby ticker needs to be adjusted). Got a phone all from my GP on Friday with results of my NT bloods and scan putting me in high risk for Trisomy 21. The scan itself was fine, but the bloods weren't good. I'm currently 38 years old and this will be my fifth baby (8th pregnancy, had 3 chemical pregnancies.
Feeling really lost and confused. Will see GP tomorrow for referral to hospital.
I also have a history of GD, SPD and 20 months ago I had a cervical cone biopsy so will most likely need a stitch in my cervix at some stage.

I'm in the September due date group, they have been wonderful to me, but thankfully so far no one else from the group has had a high risk result.

Just looking to chat with others that are going through the same or similar

Cheers xxx

Edited by SpeedBump, 01 March 2015 - 09:05 AM.


#39 readyandraring

Posted 04 March 2015 - 02:49 PM

Hello,

I just popped in and saw your post, I was high risk at my 13 week scan also. The scan and the bloods were high for me for all three trisomies. I had an amnio at 16 weeks and fortunuately everything came back clear.

I had a follow up scan at 20 weeks to double check the heart and I am scheduled to have another at 24 weeks but things are looking all fine.

Let me know if you have any questions.

Good luck

#40 SpeedBump

Posted 05 March 2015 - 07:28 AM

Hi readyandraring,

Thank you for popping in here :) My GP has been quite lax regarding everything, he rang me to tell me high risk of Downs over the phone last Friday. Said he would ring the hospital. Saw him Monday and he hadn't done a thing about the hospital. Even after telling him i wouldnt terminate if it is Downs he was telling me i would have some tough decisions to make. I went back to see him again Monday night due to uti pain and he told me he had sent the referral off. I rang maternal fetal medicine Tuesday and they had not received it. Finally yesterday they rang to book me in for ultrasound next week Tuesday... its been nearly a week of tears and stress. The dr is convinced this baby has trisomy 21 despite my ultrasound showing a very healthy baby with no obvious signs at this stage. My risk factor is 1:196. I have 4 other children and this is the first time i have been through this. I understand age is against me, but to me i wouldnt have thought my risk factor was that high really.

Really glad things are looking so well for you. Was it your scan or the bloods that raised your risk factors? For me its my bloods, high free b hcg and low papp-a.

Warm hugs
xxx

#41 just roses

Posted 05 March 2015 - 07:50 AM

View PostSpeedBump, on 05 March 2015 - 07:28 AM, said:

Hi readyandraring,

Thank you for popping in here :) My GP has been quite lax regarding everything, he rang me to tell me high risk of Downs over the phone last Friday. Said he would ring the hospital. Saw him Monday and he hadn't done a thing about the hospital. Even after telling him i wouldnt terminate if it is Downs he was telling me i would have some tough decisions to make. I went back to see him again Monday night due to uti pain and he told me he had sent the referral off. I rang maternal fetal medicine Tuesday and they had not received it. Finally yesterday they rang to book me in for ultrasound next week Tuesday... its been nearly a week of tears and stress. The dr is convinced this baby has trisomy 21 despite my ultrasound showing a very healthy baby with no obvious signs at this stage. My risk factor is 1:196. I have 4 other children and this is the first time i have been through this. I understand age is against me, but to me i wouldnt have thought my risk factor was that high really.

Really glad things are looking so well for you. Was it your scan or the bloods that raised your risk factors? For me its my bloods, high free b hcg and low papp-a.

Warm hugs
xxx
I'm so sorry for your stress, OP. But I think you need a new doctor!

1:196 is NOT high risk. It is what it is; you have less than 1/2 of one per cent chance of your baby having DS. Would you bet on a horse with those odds?

Our risk was 1:134 and the US was good. We opted for no further testing and instead booked the best fetal imaging clinic for an extra thorough morphology scan. DD was born completely healthy.

#42 SpeedBump

Posted 05 March 2015 - 08:13 AM

Hi roses99,

Yes... that is one of the first things i am doing actually, changing doctor! Over the past few days i have become more angry at the dr than anything else. I am already a high risk pregnancy and i just dont need my GP making this worse for me.
I'm not an expert but glad you dont think its high risk either. I will wait to talk with Maternal Fetal Medicine, have the next ultrasound and go from there. Having read up on cvs and amnio, i wont be doing those as the risk of miscarriage with those is higher than baby risk factor for T21.

glad to read your DD was born perfectly healthy too!! ☺


#43 Jacksmummy4

Posted 05 March 2015 - 08:41 PM

Hi Speedbump.

I agree, 1:194 isn't really a high risk. It's a slight risk. I was 1:24 for Tris 21 and 1:80 for Tris 13. THAT is high risk. There have been ladies here that have been 1:2 that have gone on to have perfectly healthy babies. What you have to remember is these are RISK factors only. NOT a diagnosis. It just means that further testing may be required if the mummy requests it.

Good luck with it all! And by the way, my 1:24 chance is a beautiful healthy 14 month old girl now :)

#44 sweetsunshine

Posted 12 March 2015 - 05:03 PM

Hi hope it's okay for me to join, not sure how active this thread is right now - I've been lurking almost two weeks and finally got signed up. I had a scan at 13w4 (or 13w6 depending on dates) and got an NT of 3.3mm. Total shock. I'm 35. They took bloods but it takes 10 days for them to come back at my hospital so we've had a two week wait till we go back in tomorrow to see what the stats are. The doctor I saw after the scan was nice but v negative, when I asked if we had any chance of a healthy baby she just sort of grimaced and shook her head (junior doctor). It was awful. It's been an up and down two weeks to say the least but reading back on this forum has really helped!

#45 little_bug

Posted 13 March 2015 - 01:31 PM

Sweetsunshine, I'm sorry you're going through this,  it's so hard. What blood test did you have, was it the standard ones that go with the nt scan? Depending on the results of those,  it might be worth requesting a non-invasive genetic test. It's a simple blood test that gets sent to the US and and screens for the most common genetic conditions.  For my current pregnancy I went straight for that as it can be done at 10 weeks. Wishing you the best of luck today and hoping you have a very low risk score.

#46 sweetsunshine

Posted 14 March 2015 - 08:01 AM

Thanks so much little bug. Well today went better, the blood test on my hcg levels and papp-a came back. I can't remember exactly but hcg was about 1.2 mom and papp-a was about 2.6. The doctor said this was v good and despite nt of 3.3 mm and my age, they changed odds to 1:750. They did a quick scan and baba was moving and good heartbeat. I'm thinking of just taking the next few weeks to breath again! And to try and enjoy this pregnancy a bit as I am sure it'll be my last. Then we will see how the 20 wk scan goes, whether anything crops up there. I feel we are not out of the woods yet but the bloods are positive x

#47 little_bug

Posted 14 March 2015 - 03:56 PM

Great news! You must be so relieved. Best of luck for the next few weeks until the next scan.  And definitely try to relax and enjoy your pregnancy!

#48 sweetsunshine

Posted 14 March 2015 - 10:57 PM

Thanks little bug, hope all is good with you :)

#49 sweetsunshine

Posted 14 March 2015 - 11:04 PM

Thanks little bug :) Ill update after our next scan. It was such a help to me to read theae forums and to see how things turned out for people. Hope all is good with you!

#50 Molokai

Posted 11 April 2015 - 06:26 PM

Hi all,

This group looks pretty quiet (which is a good thing?) but I had to post somewhere and don't feel like putting a downer on my DIG.

I'm 13+2 and our test results have not been good so far. First dating scan looked fine. The scan for the Harmony test was fine also, but the results came back inconclusive.

The NT a week later was fine in terms of the structural scan, baby is measuring perfect for dates, nasal bone present, all other things look perfect (brain, heart, bones etc). But the NT's blood test showed very low MoM levels of BhCG and PAPP-A which have increased my risk of Trisomy 18 and 13 to 1:20 and 1:192. The risk of Downs is quite low as the actual NT measurement was 1.5mm. Considering my age (39) its pretty good.

My Ob arranged me to do the NIPT again, in Sydney this time (i.e they won't send it to USA but analyse it locally). I had the blood taken Friday so I should hear back from that mid-next week. We are booked in to have an amnio in 2 weeks but I really would like some other indication from the NIPT in the meantime so we have an idea of what to expect.

The Ob said the low PAPP-A is driving the risks. That is apparently a measure of the placenta's health/function. So currently it looks like our outcomes are either going to be a trisomy 13 or 18, worst case scenario, and if no trisomy detected, we will have to be monitored for the remainder of the pregnancy as the placenta could function poorly, leading to restricted growth, low birth weight, premature birth, or stillbirth. Not great outcomes either way.

We are in a bit of shock and just trying to pass time until we get an answer one way or the other.

I hope everyone else is getting better news.

Edited by Molokai, 11 April 2015 - 07:29 PM.





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