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Support Group for Hi Risk NT Results #42


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#1 ~A2~

Posted 29 October 2012 - 11:12 AM

Hi all

New thread time

Previous thread

Regards

Ali


#2 zackcat

Posted 02 November 2012 - 10:54 AM

Just thought I’d give an update on where I’m at;

We had our final geneticist meeting yesterday and am almost 100% comfortable with our decision to take the plunge and continue this pregnancy and hope for the best. There are so many good indicators about this pregnancy, that we have much greater odds of her being ok and normal, than not. It’s been a horrible journey to get to this place, but with the anti-depressants kicking in I am feeling much less anxious and in turmoil about it. We will stay under the care of the Fetal Medicine Team and still have frequent scans to keep an eye on bub due to the placenta having 50% of cells with the extra chromosome ring marker. It feels weird for DP and I to look at each other and say “we’re having a baby” after not knowing for so long. We are so behind with buying stuff or learning about stuff – we have 1 teddy bear and that’s it!

The final result of what they found is something known as sSMC. It’s estimated that 2.7million people have it with one chromosome or another and approximately 70% of affected people have completely normal lives. The fact that bub looks good physically and internally all her organs appear normal, plus the fact she is growing well are all good indicators that she will also be mentally well. They will test her cord blood at birth to see if the abnormal cells are in her blood, but it’s pretty difficult to do any other tests apart from looking out for normal milestones. This pdf explains it pretty well  although ongoing impacts are not very well documented due to it being so rare - http://www.fish.uniklinikum-jena.de/fish_m...28Unique%29.pdf

BIG Thanks to all of you for being so supportive and understanding with me for the last few months  bbighug.gif

#3 nikkibaby1

Posted 02 November 2012 - 02:49 PM

Hi all. Im not sure where to post this so maybe if its in the wrong place someone can point me in the right direction.
I am currently 20+5 and had my morph scan last tuesday. Before i say what they found i will say my 13 week nt scan came back low risk but they did find a aingle umbilical artery.
Anyway so i went to the hospital to get my morph results and have been told i now have 2 soft markers and need a level 2 scan. My 2 soft markers are the single artery umbilical cord and a choroid plexus cyst. I am freaking out that the baby might have trisomy 18 even though my nt came back at 1:33000. The doctor told me most rimes it turns out ro be nothing but they just need to check all the organs at a higher level of utrasound. Baby is growing at the apropriate rate all between 19w and 21 weeks.

#4 MrsBobby

Posted 02 November 2012 - 07:09 PM

Zackcat,  ddance.gif I have nothing else to say! original.gif

Nikki, do the docotrs mean they are softmarkers for Trisomy 18? Are they just doing a scan or have they offered an amniocentesis?

#5 rainluv

Posted 03 November 2012 - 02:40 PM

Hi all!

I am so glad there is a support forum for this! I have been driving myself crazy trying to find a forum with current posts on the subject.

Anyhow, I'm joining you here because after my NT scan and blood screening, my results came back as:

T 21 1:2
T13 1:13
T18 1:235

hcg was 3.18, papp a was low, but I don't remember the exact number. My scan revealed a "thick measurement," but no one told me exact numbers. The Dr. told me on the high end of average, maybe a little over. He then checked the heart and abdomen for what seemed like hours (it was about 30 minutes), but didn't give any detail. They only mentioned the NT result and that I would have to come back in a couple weeks to check the heart because it was too soon to see anything clearly (I was 13 wks, 1 day.) Of course this was before the blood test, so I wasn't too worried and didn't ask questions. I got a call the next day  that I needed to come in for further testing and that's when I learned my devastating odds.

Needless to say, I'm a mess. I had my CVS on Wednesday and was hoping for a phone call on Friday, but no such luck. I'm actually feeling a little better today knowing that no bombs will be dropped, although I'm now reading into the wait as "bad news." I have an appointment Monday for another ultrasound to check the heart and can't help but think that they want to tell me in person. Had it been good news, they would have called. I know I just made that up, but I can't help myself. Everything means something in my head right now.

What an emotional roller coaster this is. Bouncing up so high with hope only to come crashing so far down with despair is really taking its toll on me. It's hard to eat, drink water, or keep from snapping at my little girls. I would not wish this on anyone, especially with so many markers pointing to doom.

I'm so sad to see that I have so much company, but I'm grateful for your posts and displays of strength. I really need that right now, thank you all.


#6 adl

Posted 03 November 2012 - 07:42 PM

Rainluv - I am not in this group this time around...but have friends that are ...  I saw your post and had to answer

.I am sorry to hear your results and worry, all I can say is that perhaps Friday, depending what time you had your CVS may have been too late for a call, in the 48hr space ..

also in my case it was my OB that called with the results when there wasnt a happy outcome not the testing place... I wish you the very best

#7 MrsBobby

Posted 03 November 2012 - 09:12 PM

Hi rainluv, sorry to hear about your results. Obviously your NT results are not looking amazing but just keep in mind that it's only a risk factor. You have at least a 50% chance that everything is going to be perfectly fine. Good that the CVS was already done. Bummer you didn't get your results on Friday but I wouldn't read too much into that. When I had my amnio I specifically requested to be told either way over the phone. BUt they might just be running a bit behind at the laboratory. Sometimes samples don't get send in in time and that might cost a day... I found the waiting for the actual test to be the hardest part, I had to wait three weeks until the amnio due to posterior placenta... Once it was done I was kind of more calm as there was nothing I could have changed.

Have you spoken to your DH of what you are going to do in the case you get a definite on one of the trisomies? i found it quite difficult to discuss this but also very important and made us stick very close together in tis difficult time.

I do hope that your results come back all clear though! Good luck hun!

#8 rainluv

Posted 03 November 2012 - 10:01 PM

Have you spoken to your DH of what you are going to do in the case you get a definite on one of the trisomies? i found it quite difficult to discuss this but also very important and made us stick very close together in tis difficult time.

I do hope that your results come back all clear though! Good luck hun!
[/quote]

First, hank you so much for taking the time to respond to my post. It's very hard to find someone to discuss this with.

Yes, we have discussed it...well, he has discussed it. He has made the argument as to why he doesn't want to continue the pregnancy. I told him I wasn't ready to discuss it but I am really starting to agree with him. I'm not sure what I will actually do when the time comes, however. I am scared to death of the actual procedures, mostly because I have no idea what they might be. I am not from Australia and the medical system is so different from home. At first, I said I didn't want to put myself through thinking about it because it may not be necessary, but I actually find facing reality a little more comforting. I am thinking the worst because no one at the hospital gave me any reason to be hopeful. I really think there was more to the scan that they didn't tell me about.

Anyway, sorry to ramble on so much, but like I said I'm not from here and I really don't have anyone close to talk to about this so your response means so much.

Edited by rainluv, 03 November 2012 - 10:07 PM.


#9 nikkibaby1

Posted 04 November 2012 - 08:57 AM

QUOTE (MrsBobby @ 02/11/2012, 07:09 PM) <{POST_SNAPBACK}>
Zackcat,  ddance.gif I have nothing else to say! original.gif

Nikki, do the docotrs mean they are softmarkers for Trisomy 18? Are they just doing a scan or have they offered an amniocentesis?

They didnt say specifically soft markers for trisomy 18 but i know they are. At the moment they are sending me for a level 2 scan to re check all the organs in more detail. If that comes back high risk they will refer me to the fetal medicine team. Im freaking out. So stressed not wanting to think about anything baby related i feel like im not getting a take home a t  home baby


#10 Cyaira

Posted 04 November 2012 - 12:14 PM

Hi all,

I thought I would post and update to give a bit of hope for those who are not undergoing invasive testing.

We had our 19 week scan and baby is STILL looking perfect, no markers, nothing. And he's a little boy. original.gif

We still have another scan at 24 weeks and we're not technically in the clear (baby can show up perfect and still have T21) but it's definitely a really good sign. Fingers crossed we continue to get good results and have a healthy happy baby at the end of it all.

We are getting frequent scans due to our low Papp-A (0.29MoM) and risk of IUGR etc but baby was measuring 6 days ahead of his due date and the measurements at our scan at 16 weeks, so I am feeling positive.

#11 adl

Posted 04 November 2012 - 08:11 PM

Rainluv - there are genetic counsellors attached to hospitals that can explain what things mean, also there are other support people to help you through this,and explain the medical parts... What your optins are,   When you get the results ask to make appointments so to get these answers ..

#12 rainluv

Posted 05 November 2012 - 09:57 AM

Hi, I received bad news today. I'm on my way to the hospital to find out what happens next. Thank you all for your replies.

#13 4Littleloves

Posted 05 November 2012 - 11:00 AM

Hi all...I am no longer part of this support group but have been once....just wanted to send thoughts and love to rainluv ....so sorry you are going through this unfair situation ..xxxxxooooo

Thinking of everyone else here too...best wishes xxx

#14 zackcat

Posted 05 November 2012 - 11:45 AM

Hi rainluv - I'm so sorry to read you are on your way in to the hospital to get more information. Please feel very welcome on here for any support we can give you during such an uncertain time. My experience with the hospital has been fantastic, so I'm sure you are getting the best information from professional people.

Hi Nikkibaby - Hope you're hanging in there sweetheart. Have you got a new scan date yet?

So pleased you have good news to report so far Cyaira and congratulations on news of your little  bbluestork.gif

Edited by zackcat, 05 November 2012 - 12:09 PM.


#15 MrsBobby

Posted 05 November 2012 - 02:46 PM

Oh rainluv, that is really sad news. I hope you hang in there and they will give you some answers, info and help at the hospital. xx

#16 rainluv

Posted 08 November 2012 - 01:43 PM

Well, I had my D&E yesterday. Luckily I was able to have the surgical option and was under anesthesia instead of having to deliver in the labour ward. (((hugs for anyone that has had to go through that))). I was on a sort of high afterwards, being relieved of the waiting and the anxiety of the procedure, but today grief has set in. I woke up this morning still having morning sickness and then realized that I'm not pregnant anymore. It hit me like a ton of bricks with a lump in my throat and a punch to the gut.  I am not sure how I will get  through this day, but my sweet little DDs are making sure that I can't sulk in bed all day. Bless their little hearts, I will be hugging them a lot today.

#17 adl

Posted 08 November 2012 - 08:22 PM

Oh rainluv ... I am very sorry and you know that is quite normal I felt the same thing as well, (I think it's the drugs they give you) and yes relief after the stress of waiting etc , was all rather unreal...but for me it took a few days for the emotion to really sink in and start, I think even a few weeks later a GF who had a similar experience rang me and I remember being so angry then upset...then just very sad...please give yourself time, be kind to you and I hope you have loads of really good support IRL as welll

#18 zackcat

Posted 09 November 2012 - 11:13 AM

Please be gentle with yourself and your family rainluv. I hope you've been offered support and counselling? Your experience is not one to take lightly and you will need to take as much time as possible to grieve and begin to heal  bbighug.gif .

Edited by zackcat, 09 November 2012 - 11:14 AM.


#19 jdmum1

Posted 23 November 2012 - 03:47 PM

It's been a while sînce I posted very sorry to hear some of u have had bad news sad.gif we are 5 days ôut from hàving bub and panic has started to set in. We were given the odds of 1:115 for Down's syndrome based on my bloods. We didn't get any further testing other then we have hád several scans which on view show things tô be all looking ok. Bub is arriving in 5 days on I'm starting to stress now as until bubs arrives we won't know for sure if we are all clear or not so trying to mentally prepare for whatever may be will be

#20 bees-knees

Posted 27 November 2012 - 04:36 PM

Hi jdmum1,

I tried to send you a PM the other day, but had some problems, and not sure if it worked.  Just in case it didn't, I wanted to say good luck with the impending arrive of your bub!  And also, if you wanted to talk to someone about what having a baby with Ds is like, please feel free to PM me.

hhugs.gif

#21 MrsBobby

Posted 27 November 2012 - 06:08 PM

Jdmum, I have been wanting to reply to your post for a few days but have been getting interupted. I hope all goes well for you for the birth. I can understand that you are being very nervous, it's probably a smiliar feeling to us waiting for the test results... I hope that you will be able to deal with whatever situation presents itself! Your scans have been good so stay positive! xx

#22 Dee+4.5

Posted 28 November 2012 - 08:49 PM

Hi ladies,
Not sure if I belong here, but can't find anywhere else that might be appropriate.
We found out last week that our baby has spina bifida.
I am trying to get my head around our baby needing spinal surgery at about 2 days old. We were planning a home birth but now need to have our baby in the hospital.

We have appt next week to find outmore but it is consuming my every thought.

Hope you are all doing ok
Dee

#23 MrsBobby

Posted 29 November 2012 - 09:09 AM

Hi Dee, that's really sad to hear. I can understand you are being a little bit lost at the moment. The thought of baby having to have surgery at only a couple of days old must be terrifying! I don't know much about spina bifida but is this surgery going to resolve the spina bifida? If so then I think this might be a thought that might help you get through it! Also, do you need to have a ceasarian or can you still have a VB? If you are unsure try and find out as much info as possible from your next appointment! Hope you stay strong! xxx

#24 Dee+4.5

Posted 29 November 2012 - 10:55 AM

Thanks mrsbobby
The surgery needs to be done as the baby's spinal cord will be exposed after birth. They will put it back in and then cover it with skin. We are not sure the effect the spina bifida will have on the baby until it is getting bigger and trying to move and walk.
We have been told that we can have a VB but I want to research it more as they will only do c/s in America for spina bifida as they don't want to cause any more damage. We are also looking into featal surgery as the out come is much better for long term but don't think they do it in Perth.
We have lots of questions for Monday but I have stopped resurching for now as it is getting a bit overwhelming !!!
Thanks for your reply it is great to talk to someone about it.


#25 Adamira

Posted 05 December 2012 - 08:14 PM

Hi ladies, this is my 3rd baby, but first time having an nt scan as I am now 31. The measurement was 2.2 ml which is fairly high I thought. Should I look at further testing? Bloods were ok but I'm worried about that number. Am I nervous over nothing?




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