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Support Group for High Risk NT Results #43

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#26 Subbie

Posted 22 May 2013 - 09:15 PM

Oh lilseads...giving you big hugs from afar sad.gif . May your little angel rest in peace. I'm truly sorry of the loss of your little chance...xxx
Mum2astar - I'm also sorry for your news...And sending well wishes and hugs your way. Wishing you all the strength in your next steps, thinking of you xxx
Miss anthropist - congrats on your twins but sorry to see you in this group, it's  definitely stressful. My odds were 1:2, very nigh nt 4.5 and my results were clear so it is only a risk factor. Wishing you a fast result . The waiting sucks big time.
Worried mum glad to see everything is well and hope the rest of your preg is a smooth journey x
My update - My fetal echo was perfect, structural ultrasound all good. Dr said as long as 20wk scan is good then I'm a normal low risk preg, so fingers crossed my results in 4 wks are good. Dr believes they will be based on this scan. Feeling more hopeful.
Good luck to everyone waiting, waiting... Xx

#27 Andr3a

Posted 23 May 2013 - 09:30 AM

Mum2astar and Lilseads - my heart goes out to you ladies.  I hope that you and your families have the peace and time you need to recover. hheart.gif

Subbie, I'm really happy for you. I hope it's not too long before you have a little bundle of wriggling joy in your arms!

Worriedmum - you're a superstar. You've supported so many of us. Thank you rolleyes.gif

Miss A - Hope your results come in quickly and that all is well.

My results have come in, and thankfully everything is okay for us biggrin.gif Just to recap for anyone who might find this useful later (I spent days scouring the internet for women whose stats matched mine and their outcomes, so this might help someone), we had an NT of 1.4, Papp-A of .37 and HCG of 3.03, adding up to 1:47 chance for T21.

We had the MaterniT21 blood test (CVS not an option for us), and the 9 day wait was a killer. I don't think I've ever been so anxious and stressed before (6 years of law exams were a piece of cake compared to this). Luckily our results came back before the scheduled 14 day wait.

We have also found out that we are having a girl, so we went last night to buy our first baby things. This was a real milestone for us (having been through the miscarriage last year and being so anxious for the first 14 weeks of this pregnancy).

I will continue to check into this group every now and then when I can to offer support. Ladies, best of luck and my thoughts are with you all. xxx

#28 Subbie

Posted 23 May 2013 - 10:22 AM

Yayyy andr3a great news, congrats on your baby girl xx original.gif  original.gif that really is lovely news, hope you guys are definitely more relaxed now and can enjoy your pregnancy.

#29 Cookie78

Posted 23 May 2013 - 02:01 PM

Lilseads and mum2astar,you have my sympathies.  Take care of yourselves.

Miss a, wishing you quick and clear results.

Andrea, very happy for you that the results came through quickly and in your favour.  Congrats on your little girl and your first purchases.

Subbie, it's good to hear your 20wk ultrasound went well, it must be such a relief to be reclassified as low risk..  Enjoy the rest of your pregnancy.

Worried mum, I am so grateful for your support and knowledge.  

My 20wk scan is next Friday and I will check in with the results.

My thoughts are with you all.

#30 WorriedMum2013

Posted 24 May 2013 - 01:03 AM

Hi ladies... Not rid of me yet!! LOL Tounge1.gif. Late this arvo had one of those heart stopping moments when I see the hospitals number come up on my phone!!! All I'm thinking is... Oh no, something is wrong with the full amnio results!!!! But, phew, no ... Calling me to get an extra blood test done before my next appt to check for blood disorders.... Just in case type thing & to schedule me in another scan before my appt at 23/24 weeks. I was so relieved!!!! Omg!! Too scary! Also asked about my full amnio results.... And yes..... All completely NORMAL!! hooray!! I'll have enough to worry about with the rest of my pregnancy.

Subbie.... Fantastic news on your scan!! Breathe easy now & I wish you well for the rest of your pregnancy! original.gif

Cookie, GL with your scan & im sure all will be well.

Andr3a.... Omg congrats on your babygirl.gif !! Fantastic news with the all clear!! May you also have an uneventful & enjoyable remainder of your pregnancy. Xx

Miss A, hope you got good results back.

Thinking of all those here.... Especially those making or have made difficult decisions & those waiting on results. While my pregnancy will be by no means easy, im eternally grateful to no longer have to worry about chromosomal issues. Thank you all for your support & kind words, I believe we heal each other through mutual support. Much love to all. hheart.gif

#31 Mum2astar

Posted 24 May 2013 - 09:13 AM

Congratulations to everyone that has had good results. Its truly a blessing. Take care of yourselves and try not to stress the coming months.
To everyone that is waiting for results i hope you get the good news you really want. If they are not know that you are not alone in this. There are so many knowledgable people on this forum that can listen and help.
AFM - i flew back down to Sydney to have my obst perform the procedure in hospital. Was in brisbane when this all hsppened but dropped everything to come back to my home state. My cvs was done at a hospital in bris that doesnt perform termination because of religious beliefs even if for medical reasons. The other hospital wouldnt take me because im not in the catchment area (wtf). So after all that i was referred to an abortion clinic. I declined and came back to Sydney. The procedure itself was ok. Good to be knocked out. I feel strangely relieved but pretty emotional.

#32 Subbie

Posted 29 May 2013 - 10:44 AM

Hey mum2astar, hope your doing ok, been thinking of you (and lilseads) xxx

#33 WorriedMum2013

Posted 29 May 2013 - 02:14 PM

Star, you are a star. What a drama you had to go through in this already difficult time. hheart.gif

Ditto what Subbie said.

Anyone new reading, just know your not alone. Xx

#34 zackcat

Posted 29 May 2013 - 02:50 PM

Hi Everyone

I used to be a frequent poster in this thread so you might have read about my pregnancy experience and thought I’d give a little update. I know that I used to wonder how people’s stories ended up, so here we go….

I conceived naturally for the first time aged 43 and based on my age my Dr recommended I skip the NT test and go straight to a CVS. At that age and at 13 weeks pregnant I had a 1:12 risk of down syndrome. The CVS came back clear within 48 hours for the 3 major trisonomys, including DS. We started telling everyone our exciting news only to be shocked when we got a call 2 weeks later to say they’d found a chromosome anomaly during further culturing of the placenta tissue.

We had blood taken from both of us, but the anolonoly wasn’t in either of our blood work. They had found an extra chromosome 2 in approximately 50% of the placenta sample. I then had an amniocentisis around 16 weeks and had to wait another 3 weeks for test results. As people on this thread know, the waiting can be unbearable and the googling can be terrifying.

The amnio results showed the same extra chromosome in 4% of the amniotic fluid tested, so it was confirmed as a mosaicism. We’d been referred to the genetics team up at the RHW in Randwick after the initial CVS results and were now being looked after by the Maternal Feta Medicine Department up there as well.

We’d had lots of scans by now, including a detailed heart scan by a fetal cardiologist and were happy that so far nothing unusual had been detected and bub was growing well. The geneticists had decided we had something similar to sSMC which affects 2.7million people worldwide with issues ranging from none to profound and covering mental, emotional, learning, development & physical problems. Pretty much they knew what our little girl might have based on analysis of the placenta tissue and amniotic fluid, but they couldn’t tell us how it might present in her, if at all.

The support at the hospital was amazing and we never felt pressured or rushed in our decision making. So around 23 weeks gestation we decided to take a leap of faith and continue with the pregnancy. It was great to finally be able to think “I’m having a baby” and know it wasn’t too many weeks away!  

We continued to have frequent scans to keep a check on the baby’s growth and she grew like a champion. I’d been throwing up pretty much the whole pregnancy and was pretty stressed about everything so the hospital had referred me to their perinatal department and the psychiatrists had put me on anti-depressants to help manage the acute anxiety I’d developed.  It was the best decision for me as it enabled me to start thinking positively about the baby even though I was still scared with so many unknowns.

I had a leak around 35 weeks, but it re-sealed and they kept a close check on my fluid levels for a couple of weeks, then I had another leak at 37+6 and this time the membranes had ruptured so I was given 2 days to spontaneously deliver or go in for an induction. I went in at 38+1 for an induction at 8am and it was a beautiful and incredible experience that resulted in Mia being born at 3.14pm that afternoon {a quick induction  tthumbs.gif }.

She was 3.03kg and just perfect. The geneticists checked her out while we were in hospital and found nothing out of the ordinary with her. The cord blood was tested and the extra chromosome was found in 1/205 cells tested, so a very insignificant percentage. They have said they don’t want to see her again until she is 1 unless we notice anything unusual.
Mia’s now 14 weeks old and is just divine. She weighs 4.97kg and her length and head circumference are totally normal. She’s doing everything a baby her age should be doing and keeps us laughing all day long with her giggles and chortles and gorgeous smiles.

The support and friendships I made on this thread were fantastic and I’m so grateful it exists. I know how sh*tty the testing and the waiting and the decision making process can be, so I wish everyone the best and may you all end up with the happy & healthy babies you want xx

#35 WorriedMum2013

Posted 29 May 2013 - 09:41 PM

She is beautiful Zakcat!!! Congrats!! I know that you don't regret one day of the trouble you went thru. I hope many women women see & read your inspirational story. Thank you so much for sharing. Enjoy your beautiful Mia hheart.gif

#36 Nervousmama

Posted 30 May 2013 - 11:00 AM

Thanks for your post zackcat - gives everyone with difficult pregnancies hope. And what a gorgeous girl you have!
I've been away and was so sad to read the bad news posts when I got back, my heart breaks for those ladies.
I'm still waiting for my further heart scan and then I'll be more or less in the clear - assuming my placenta holds up. If I can get to 37 weeks, I'll be happy with that.
Thinking of all you ladies going through this terrifying time x

#37 Subbie

Posted 30 May 2013 - 02:59 PM

Oh zackcat that is fantastic....she is just beautiful, very pretty bubba. Your post brought tears to eyes.....thank you for your post, it's always lovely to hear how it turned out and happy endings are the best and give ppl experiencing similar results, conditions hope. All the best for your beautiful Mia.
Hope your heart scan goes well nervous mama.

#38 KMC78

Posted 01 June 2013 - 04:33 PM

Hi - my thoughts and heart goes out to those who are going through a terrible time.

Worried Mum - I just thought I'd let you know that I had a low papp a like you (0.11) and this resulted in a high risk 12 week scan.  I had the Maternt21 test receiving the all clear.  I took asprin until week 34, had steriod shots at 32 weeks as growth had dropped off slightly and ended up being induced at 36+1 as everything was looking fine, but the Dr didn't want to risk the placenta breaking down.  A beautiful little baby boy arrived that night weighing 2960grams (5 pound 9).  He was a little on the small side but perfect and there have been no issues feeding.  He has put on over 400grams in the first 10 days of being home and grown two cm.  He arrived via an emergency C section under general (as I didn't have an epidural and they wanted to do it quickly) as he was distressed.  Recovery from the c section has really been a non event and I was up walking the next morning.  Like you, I had regular scans.  I hope everything goes well with your pregnancy and good luck to everyone else on this board.

#39 vron

Posted 01 June 2013 - 06:39 PM

Hi everyone,

I am 14 weeks pregnant tomorrow with my first. We got the results back for the 13 week combined screen which showed a low risk for down syndrome but an increased alpha-fetoprotein level of 2.6 (Upper limit is 2.5) which is suggestive of an open neural tube defect. Has anyone else had a similar experience? We will be having a more detailed 18-20 week scan but the wait is causing a lot of anxiety.

#40 WorriedMum2013

Posted 03 June 2013 - 11:23 AM

Hi KMC. Congrats on the birth of your beautiful bub. I'm so glad all went well despite the v low papp a. It gives me hope. I really appreciate it. This is my third bub - had IUGR with the other two.... And cause isn't very clear.... Which is why I'm having extra blood tests to check for different blood disorders. Papp a with the other two wasn't as low... So its likely that wasn't the full cause the previous times. I have a scan in two weeks, so it will be interesting to see at what point growth drops off at. Im remaining hopeful, but at the same time I realize I'll prob have bub a bit early.

Vron, hi there. Hopefully someone with some experience will cut in & be more helpful. I'm sure you probably could have testing earlier... Not sure if an amnio is suitable, prob could be more conclusive, but really its an unpleasant experience... One that should be avoided if possible. Try not to stress. Do your research & ask loads of questions of your ob. Xx

#41 colpheepip

Posted 05 June 2013 - 12:33 PM

Congratulations on your baby boy KMC !

Zackcat your little Mia is just divine xxx Congratulations !

My heart goes out to everyone going through the testing and waiting time.

You can read my story earlier in this thread but like Zackcat my fourth child's results showed a mid level result for mosaic trisomy 18 (Edwards Syndrome) at 60%. We have just celebrated her 18 month birthday and she is just delightful, intelligent, chatty, eats like a horse and is such the best behaved baby ever. She is delayed in her gross motor skills (all my children were late walkers and crawlers:)

Please contact me if anyone ever wants anymore information.

Thinking of all the mummies and their families

#42 melanieb530

Posted 05 June 2013 - 08:14 PM

Colpheepip what a lovely positive story - thank you for sharing!

#43 Melissak567it

Posted 12 June 2013 - 02:11 PM

Hi my name is Mel and I'm new here. We tested 1:327 chance of downs syndrom a week ago at my 12 wk scan. I have been so worried, I know the odds arnt that bad compared to what some people get but they are worrying to be as they are borderline high risk. Then last Friday I started heavy bleeding so I was thinking maybe nature had made the decision for me but after a very stressful monday things have settled down and bub is still hanging in there. My results were scewed because of the nuchal measurement of 2.8 and PAAP A being 1.96 MOM  We decided to do the igene test and will do that next monday so then theres the anxious 3 week wait. The thing that scares me most is what we would do if it was positive. I never thought this would happen to me, I'm 32 years old and my first son had a 1:13000 risk sad.gif. Hope you dont mind me dropping in on your forum.

#44 SlightlyLeftFeral

Posted 12 June 2013 - 02:46 PM

Good luck Melissa, hope the wait isn't too painful. I'm the same age, and DD's was something like 1:16,000. My bloods were fine it was just the measurement of 3.4mm that gave me the high odds.

My results were 1:161 for DS and I still haven't contemplated what I will do if it is positive. I had my amnio yesterday and will get the prelim results back hopefully tomorrow. The good news, for me, was that during the scan they checked all the soft markers and all were fine, so I am sure this baby will be OK.

#45 Melissak567it

Posted 12 June 2013 - 06:55 PM

Thank you its really scary I never thought id have to go through this sad.gif. I hope your lil bub gets the all clear fingers crossex for you!! My ob says my paap a was low but the way I understand it is that its high? I think just knowing will be enough for us but you never really know how you will feel xx

#46 lilseads

Posted 13 June 2013 - 07:05 PM

Hi guys, I hope you are all well. It has been 4 weeks today since we lost baby Chance and the pain in my heart is still very real. However, I know the decision was right for my family. I'm just checking in to whip over the forum but in particular I was wanting to see how Alexis was doing? I'll keep popping in from time to time as I'd love to see how she goes. Fingers crossed and best wishes to all of you xxx

#47 WorriedMum2013

Posted 17 June 2013 - 01:38 AM

Hi ladies,

Mel, try not to think too much about things, honestly the wait is the most excruciating part. Do things you enjoy & keep busy. Your odds are on your side! original.gif Also papp a should be around 1 MoM, so your right, it is high, which is not a number connected to T21. I'm not sure what if any side effects of high papp a are, but surely higher is better than lower.

Pinkstar, I hope your results came in & you have happy news to celebrate! ;-)

Lilseads, its nice to hear from you. original.gif I too think of Alexis, I hope she is going well & remains in positive spirits.

AFM, now over 23 weeks & getting loads of movements & despite my terribly low papp a (.19 MoM) bub is so far charting on the 50th percentile!! Extremely pleased. Also I got some answers to the most likely reason for my low papp & IUGR babies is actually because I tested positive to an antibody linked to several different autoimmune disorders - which, touch wood, I don't have myself so far, but it can manifest itself by creating blood vessel restriction which it appears to do in each of my babys placentas. Go figure!? So only treatment is aspirin & monitoring.... Wait & see thing, but its good to have an answer!! wink.gif

Best of luck to all travelling this path. I hope for good results for all & the strength to come out the other side. Xx

#48 Justaduck

Posted 24 June 2013 - 10:21 PM

I just wanted to update in case anyone looks back through this and wanted to know what ended up happening with me.
I asked a few months ago if anyone else had been pregnant again after having a high risk result from bloodwork in a previous pregnancy. I was advised that I would likely test high risk again.

With DD, my bloods were 6.01 Mom (Hcg) and the Pappa was .06 MoM. Gave me a risk of 1:207 of her having Down Syndrome and I was 23 at the time. She had a chromosome analysis at birth and everything was fine.

I had my scan with #2 today and expected the worst but my results came in better than expected & I actually cried when they told me just how different they were.
T21 - 1:1227 (age risk 1:967)
T18 - 1:49990 (age risk 1:2500)
T13 - 1:156031 (age risk 1:7802)

My Hcg was still higher than average - 3.59Mom (142.000 IUI) but I think having the Pappa closer to it at .90MoM (1.800 IUI) helped with the adjusted risks being so good.

#49 Melissak567it

Posted 25 June 2013 - 12:09 AM

Glad to hear you got good resilts. I wish mine were like that!! My first pregnancy I had great results and this time the fact that they are not makes it so much harder. My nt of this bub is double ds1s sad.gif

#50 Cantankerous

Posted 27 June 2013 - 02:03 PM

sorry ladies wrong group.

Edited by Cantankerous, 27 June 2013 - 02:13 PM.

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