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Support Group for High Risk NT Results with NO further invasive testing ~ #8


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#1 lilymurray

Posted 07 October 2010 - 02:19 PM

New thread time ladies original.gif

Link to previous thread

#2 Bubble07

Posted 11 October 2010 - 12:44 PM

Mrs Peel - 18 week scan was good, heart looked good and there were no other issues at that stage. They will not reduce my risk though and are keeping me at the specialist unit and I will have another scan at 28 weeks (just under three weeks now) to make sure my placenta is still doing the right thing. I am hoping that they will reduce my risk otherwise I will be limited as to where I can birth. Thanks for asking after me.

#3 Ms Peel

Posted 15 October 2010 - 02:42 PM

Hi Bubble 07,

All the best for the scan next week. I hope your risk can be reduced, so you can birth where you wish.

Emma.



#4 ~A2~

Posted 25 February 2011 - 11:56 AM

Just bumping this thread up to see how you are each going and if you are still chatting here.

Regards

Ali


#5 Peevish

Posted 31 March 2011 - 07:21 PM

Hi - this group is really quiet and I'm wondering if there is anyone else out there who has elected no further invasive testing and is currently waiting for their baby to arrive.

I have 9 ish weeks to go and elected no further invasive testing after getting a 1:115 result for T13 and T18. I've had 2 morphology scans which don't show anything unusual but now I'm well over 1/2 way I am starting to think about the what ifs.

I have been  ph34r.gif in the other high risk results group but everyone there seems to opt for amnio or cvs. I feel like I have the only dr who hasn't recommended further testing.


#6 greenthumbs

Posted 04 April 2011 - 07:33 PM

Hi Beetbix!

Just found this group.

Our bub was given a 1:146 chance of down syndrome. We declined the amnio as we knew we would keep bubs no matter what.

My NF was normal, but my bloods came back with low pappa. I was told this over the phone by someone at the ultrasound clinic, but as I was busy trying to take in the info I neglected to ask what other factors can cause this. He did say there were other reasons for it, but didn't say what.

I have since had two appointments with a midwife and she couldn't answer this so as my pregnancy is now deemed 'high risk' I have to be under direct care of an obstetrician (I'm in public system). I have the first appt with this ob next week and can't wait to bombard her with questions!

I have found it very hard to deal with, mainly because every time I have a medical appt they have to go on about the high risk and that we 'declined amnio' it's the first thing written on my yellow card.  I am enjoying this pregnancy so long as I keep away from the medical profession, otherwise I have left each appt in tears and worried about further testing and so on. I wish I had never had the test, I just assumed it was what everyone did. Now I am researching everything and before agreeing to anything, finding out what outcomes are possible and where they may lead. We are booked for a cardio scan at 24 wks despite the anomoly scan all coming up perfect. So I will discuss this as well with ob next week and decide if we really need to have scan.

I'm not worried about our little one having ds, I am more concerned with whether or not this will mean invasive testing, staff pushing for different outcomes to what I want (natural birth, b/feeding etc).

All I feel right now is regret for having the test in the first place and defensiveness/protectiveness of my bub, body and labour.

Gosh, what a babble! But as mentioned, only just found group and has been nice to get it all out.

Cheers original.gif

#7 Peevish

Posted 08 April 2011 - 11:13 AM

Hi Greenthumbs - I'm sorry you fit this group . . . . .but, happy that I have someone to chat to in this group.

I hope if you decide on a cardio scan it goes well. I am happy to have all the recommended scans as we want to know what is happening.
I have had 2 morphology scans which show nothing untoward, these have put my mind a little more at rest.

Did your medical advisors push you for an amnio? I guess we are lucky in that my obs is on board with our decision and didn't, in our case, recommend an amnio.  But, one of the factors for us was that we don't get pg easily (ICSI baby) and given my age we weren't willing to risk miscarriage and then possibly take ages to get pg again.

Apparently I had weird blood results which gave me the high risk for T13 and T18 and yet low risk for DS.

I have it stuck on my card that I am high risk for T13 and T18 but since I only see my obs I'm not getting any comments about it. I have my pre-admission appointment in a few weeks so I will tell you if I get any weird vibe from the midwife then!



#8 greenthumbs

Posted 09 April 2011 - 09:26 PM

Hi Beetbix

It is great to chat with someone who understands!

I have my first appt with the ob on Tuesday so am looking forward to asking millions of questions. I am happy to have the cardio scan at this point as I'm sure everything will be fine and it will hopefully make the doctors lay off.

My GP I only told over the phone about the high risk and she just said my attitude was great about it. The midwife didn't hound about the amnio, just made absolutely sure I was sure. She had a student with her during the appt so had to explain it all to her as well, why some people choose to have an amnio and why some don't etc. Made me feel like I had to justify why we decided not to as it seems that most people do these days. At each appt so far it is brought up, whether it's the midwife, the sonographer or the admin staff.

It will be interesting to speak with the ob and see what her deal is. I've been told she is very particular (not sure what this could entail) so I'm just hoping at this point I can at least explain how awful these visits are making me feel and how I feel like no-one is remembering that I am growing a baby, not a 'high risk'.  Also to find out what the 'high risk' status means for our care and labour etc.

I agree that the morphology scans made us feel better too, just getting that confirmation that all looks normal was nice.

Let me know how your appt with midwife goes!

greenthumbs original.gif

#9 greenthumbs

Posted 16 April 2011 - 10:25 AM

Hi Beetbix

I had my appt with ob on Tuesday. Unfortunately she wasn't in so I saw a registrar (?) instead. She was lovely.

We went over the scans and they are all normal. I asked what other things can cause a low papp-a blood result. She said that it can indicate the bubs will be small, therefore as bubs with down syndrome are often smaller in weight, this can be an indication so they just keep closer eye on bubs growth with extra scans and also they do a cardiac scan to make sure all is growing normally.

Seeing as my bump is all growing normally I asked if the cardiac scan comes back normal, could I be down graded to normal risk. But unfortunately once that tag is there, that's it.

But provided there are no heart issues, there is not really any reason (provided no other issues crop up) for the delivery to be anything other than normal.

I'm feeling a lot less anxious after that appointment. I'm just looking on it as a plus that I get extra scans to see bubs original.gif

Hope all is going well with you - not long now is it? Are you getting nervous / excited?

#10 Peevish

Posted 02 June 2011 - 07:06 PM

Hi Greenthumbs - just to let you know I had a healthy baby boy last week! He is on the scrawny side and apparently my placenta didn't look that good when it came out but he is healthy which is the main thing and a huge relief.

I wish you all the best for your pg and hope that you will keep me updated on your news. I will keep lurking this thread for news.

#11 familyx5

Posted 15 July 2011 - 12:41 AM

hi i am glad i have found this page i am 12 weeks and just been told my blood test put my baby at high risk of 1 in 245, dr gave no other info so hubby and i are going on monday to see her she was talking about having to have more tests but we said no, we will have all the scans in the world but nothing to rick our bub, everyone we told wants us to have the other tests so its great to know we are not alone in our thoughts

#12 custardjo

Posted 19 July 2011 - 02:12 PM

this seems a loney group huh.gif but thought I'd share my NT results! after getting good results on the scan my bloods have  pushed my ratio to 1:86 for ds WOW! NT measurement was 2.2 papp-a 0.51  B-Hcg 1.23 which within normal limits but they like the bloods around  the same level. I'm not planning on having CVS or amino at the moment  will wait and see what the 19 wk scan shows up then I can do amnio if I  want.

Familyx5 do you know want increased your risk factor?

Edited by custardjo, 19 July 2011 - 02:13 PM.


#13 tintin22

Posted 15 September 2011 - 07:53 PM

Anyone reading this thread? I would love to share with others like us who won't do further testing.. Our twins are due March 1st and twin 2 had a DS risk of 1:15 after nucheal fold of 5.2 mm and two cystic hygroma's

#14 Justaduck

Posted 15 September 2011 - 08:37 PM

I posted in the other group because there were no posts here since July, but yes we are high risk (1 in 207, at age 23) and the long 7 week wait until the next scan. Worsened last night when I actually got the paper results of the scan - scan was great, but the bloods way out. My hCG was 6 MoM, haven't seen any higher than 4 with google, so quite confused.
My nuchal fold was only 2.1 though, so think we are a bit different there. What are the cysts you mentioned?

#15 tintin22

Posted 11 October 2011 - 07:28 PM

Well good news today. We had out 20 week morphology scan and the cyst have gone. This is rare but excellent. It means the 5.2mm NT measurement might not be real IYKWIM - they were measuring the cyst and therefore can't say if there was an abnormal reading or not. Meanwhile both babies heart, brain and nose measurements were perfect so no physical signs that they can detect of any issues - so things are starting to look better.

#16 becs:)

Posted 26 October 2011 - 09:20 PM

Hi everyone ( if there is still anyone posting in here)

I am due in April, have a 1 in 78 risk for trisomy 18, and my partner and I have decided to not go through with any further testing.  I am 28 so never really expected to have such a high risk with this test, but we know termination is not an option for us, so we do not want to put a potentially healthy baby at risk of miscarriage.  

Would love to chat to others who are also waiting out the pregnancy to find out either way, and holding out hope that each scan is positive.





#17 fireysusan

Posted 17 January 2012 - 03:55 PM

G'day,

Thanks everyone for sharing your stories - they are really helping me through a difficult time right now.

I am 40 and will be 41 in July when my 2nd bub is due. This wasn't a planned pregnancy and with my son being almost 10 and my husband's kids being 19 and 21, he has had a hard time coming to grips with this pregnancy.

I was diagnosed with Graves Disease (hyperthyroidism) at 7 weeks pregnant, but this is now being controlled with bub safe medication by my lovely endocrinologist and I am feeling so much better.

I just had my 12 week scan last Friday and got some scary results re: DS - it's 1:5, with a Nuchal fold of 2.0 mm, BhCG of 4.01 and my PAPP-A of 0.25.

My hubby is freaking out about the DS of 1:5, and the obstetrician (who I only met today and don't like much at all) is pressuring me into an amniocentesis. He is also completely unsupportive of my choice for a home birth with this bub after a horrendous experience giving birth to my 1st child.

This is my last chance for another baby and I don't even want to take the smallest risk of losing her/him. While I hope (and feel) that our bub is fine, I could deal with DS, but my hubby is struggling. However, I don't want to feel pressured into an amniocentesis that I don't want just because he is having a hard time.

Any help anyone can offer would be gratefully accepted. Good luck to everyone out there dealing with pregnancy problems original.gif



#18 tintin22

Posted 19 February 2012 - 09:02 PM

Here is an update for anyone who might read through this thread. We delivered our twins on 16/2 and twin 1 was a healthy 3kg exactly. Twin 2 the one that had two cystic hygromas that disappeared at 20 weeks and showed no signs of DS on scans and not heart problems and a good size on scans was also born. She hdoes have DS (we had a 1 in 15 chance) she also has a major heart defect that will require two open heart surgeries and her weight was 1.4kgs (a month before she was born her scan said she weighted 2kg!). We are very happy to have our beautiful twins with us and now we are starting on the journey as to what support there is out there for us. good luck to you all and please feel free to PM should you be going down this path yourself or have any questions.

#19 bees-knees

Posted 25 February 2012 - 09:22 AM

Not sure if this groups is still very active, but I just wanted to say that is anyone wanted to chat about having a baby with down syndrome, please feel free to pm me.

My daughter was born two and a half years ago with Ds, and I'm more that happy share any info that might help someone.

#20 Justaduck

Posted 26 February 2012 - 05:29 PM

Will copy my post from other Hi Risk NT group in here as we didn't have an amnio:

Hi everyone just thought I would update to give hope to those with hugely abnormal blood results.
I am 24 (was 23 when I was 12wks along) so from my age should have had a 1:1100 risk of down syndrome. My NT scan itself looked perfect, but my bloods were through the roof. The HcG was 6.01 MoM, and I think the Pappa was 0.83. Those blood results put me at a 1:207 risk for DS. We decided not to do the amnio, but at that time I was unaware at how huge the hcg was up.
Our baby girl was born on Thursday and has does not have down syndrome. We had a chromosomal blood test done just after birth for our peace of mind (get the results back tomorrow).
I hope that in sharing this it can help some of you with high blood results have some hope that their bubs will be fine and healthy when born.

#21 Anna_in_Canberra

Posted 02 May 2012 - 06:19 PM

I'm not sure how active this group is, but I wanted to post here.

I'm 13 weeks pregnant today with my third child. This pregnancy followed two miscarriages. I had my nuchal translucency scan on Friday and the NT measurement was 4mm. No one talked to me after the scan, and I was told the blood test results would take a week. I knew the 4mm measurement was worrying and spent the weekend Dr Googling, freaking out, and bursting into tears.

The blood test results came back on Monday:

1:46 for T21
1:259 for T18
Low risk for T13

Based on my age and the NT measurement I had been expecting a higher risk, but my blood test results were good and bumped the numbers up a bit.

My husband and I agree that if the baby has Down syndrome we will continue with the pregnancy. Given that and the (in my view, anyway) low risk of T18, we don't want to risk another miscarriage by doing invasive testing.

I saw my OB today. The appointment went well. I'd heard that some doctors can be pushy about having invasive tests, but ours wasn't at all. He answered my long list of questions and his answers largely confirmed what Dr Google had told me, and didn't change our views of the next steps we'd like to take. He's lodged paperwork for us with the Fetal Medicine Unit at Canberra Hospital. They'll call soon and we'll make an appointment to go in and talk to them.

Our plan is to talk to the FMU people, tell them we don't want to do invasive testing at this stage, and talk about the next steps (extra scans, etc).

I'm feeling a lot better now that we have a rough idea of what will happen next. I can live with the uncertainty a lot better than with the possibility of a potentially avoidable miscarriage.

I let my boss know what was going on this morning and she has been awesome. She told me to take time out or time off if I need to, and to let her know if my workload is too much under the circumstances. I'm glad I'm in this job with this boss at the moment.

#22 Anna_in_Canberra

Posted 09 May 2012 - 04:52 PM

This group seems pretty quiet at the moment, but I'll post my update here as well as in the other one:

Just back from our FMU appointment. It went really well. We had another scan and the baby is looking great - measuring on track or a little ahead, everything looking as it should at 14 weeks. The nuchal measurement has reduced from 4mm to 2.4mm, also a good sign. We'll have a detailed anatomy scan at 18 weeks. They weren't pushy about testing at all, but gave us the option of an amnio at 35ish weeks, when the only risk would be a slight one of premature labour. The benefit of knowing at that point would be that if the baby did have Down syndrome I could give birth at the major hospital, which would be better equipped for that, rather than the smaller one closer to home. Pretty sure we'll do the amnio then. We're feeling much better after the reassuring scan.

I was telling my husband "Now we can find out the sex at 18 weeks instead of 20" and the ultrasound operator asked if we wanted to find out now. I thought they couldn't tell for sure at 14 weeks, but they could! Our third baby is definitely going to be a ... BOY! It's cool to know so early!




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