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Support Group for High Risk NT Results #44


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#126 twilightangel

Posted 11 July 2014 - 09:34 PM

Congrats to you both on your good news today. That's awesome :D

#127 TardisAngels

Posted 11 July 2014 - 09:52 PM

Thanks twlightangel :)

#128 AuntyFoxy

Posted 16 July 2014 - 03:41 PM

Hello - I am new to EB and to this forum, but I wanted to say thank you to all of your for sharing your stories, thoughts and feelings.. its been a great comfort to me in the wee hours when my brain won't shut off and I'm googling like crazy, hoping for information, solace and similar experiences... so thank you, thank you thank you, from the bottom of my heart and the tip of my baby's toes!

XX AF

#129 ThemrsN

Posted 16 July 2014 - 04:20 PM

Hi all

It's amazing how many of you there are out there. We had our scan on Monday afternoon and we were told we have a 1/4 chance of down syndrome. The sadness comes in waves, sometimes i can hardly breathe. I have the CVS tomorrow and will get the FISH test which i will hopefully get back next Tuesday. It's going to be a long weekend. We worked so hard at getting this baby and i am just starting to feel connected to it. I really don't want anything bad to happen to it.

NT was 3.2; PAPP-A 0.36; HCG 3.32. Chances based on my age were 1:914 (I am 26) but NT and PAPP-A dropped those chances dramatically.

Edited by ThemrsN, 16 July 2014 - 07:18 PM.


#130 ThemrsN

Posted 18 July 2014 - 09:48 PM

Hi all, I wanted to let you know we have been given the all clear from the FISH test. Still waiting on the chromosomal  test in a couple of weeks but we only had a high risk of T21 which the FISH test thankfully ruled out. I have read from earlier posts that there seems to be an amount of hopelessness, that 1 out of 4 actually means 4 out of 4. I am here to assure you that sometimes it actually does go your way and that in my case, it thankfully did. I was planning a little funeral and it honestly didn't occur to me that this baby would be fine. We have found out we are having a beautiful baby girl. Still a high risk pregnancy with possible preeclampsia but that seems insignificant to me after this week.

Mak84, I am so very sorry for your loss. We had very similar odds and i understand the absolute heartache of the wait. I do hope that you are blessed with a happy, healthy baby when you are ready xoxo

Edited by ThemrsN, 19 July 2014 - 03:06 PM.


#131 mak84

Posted 19 July 2014 - 01:32 AM

Hello,
Im writing tonight because I wanted to thank all of these brave ladies posting as it has helped me through the worst week of my life.
We fell pregnant for the first time 13 weeks ago on our first try and were really surprised and happy, we felt incredibly lucky and grateful as we were aware how hard it is for some couples trying to get pregnant. A lot of our friends are soldiering on through infertility/miscarriages etc. We couldn't believe it happened for us so quickly.
We had our nuchal translucency scan on tuesday and naturally I felt a bit nervous about what the result may be but thought 'don't be silly' we will be fine. Also I was so excited to finally see a clear ultrasound of the bub and finally hear the heartbeat. We fell so in love seeing the baby wriggle, having a top time in my belly.
20 mins later our result came back 3.3mm on the NT which isn't great and my bloodwork was very bad giving us a high risk of 1 in 3 for DS. We were absolutely shattered.
We booked a CVS the next day which I was worried about. It didn't hurt but felt really strange. The risk of miscarriage is pretty low on a CVS. I had no bleeding and very minimal cramping after.
We were told that even if the result came back clear for DS we would still have to test for heart abnormalities etc at 16 and 18 weeks.
Our FISH results came back the next day. Positive for DS. And we were told it was a little girl.
I have never cried as much as I have this week. I wouldn't wish this on my worst enemy and my heart breaks for everyone going through this or something similar. The guilt you feel contemplating the decisions ahead while you have your baby in your belly is gut wrenching.
Sadly we are ending our pregnancy. I have to believe that this is what is meant to be, and that this is the decision that is right for us.The 3 of us.
We have named our baby and we love her. And we are just so sad.
This week, at night when my partner had gone to sleep and I was awake and lonely with my thoughts I scoured the internet for answers/guidance/education, and Forums such as this saved me. It made me feel connected and supported when I felt so helpless. I hope my post helps others just like everyone else's helped me. Even though our outcome has been grim, that's life and somewhere, somebody else is going through it too and you're not alone.


Sorry my post was so long!!!!! :heart: :heart:

#132 AuntyFoxy

Posted 21 July 2014 - 12:04 PM

View PostThemrsN, on 18 July 2014 - 09:48 PM, said:

Hi all, I wanted to let you know we have been given the all clear from the FISH test. Still waiting on the chromosomal  test in a couple of weeks but we only had a high risk of T21 which the FISH test thankfully ruled out. I have read from earlier posts that there seems to be an amount of hopelessness, that 1 out of 4 actually means 4 out of 4. I am here to assure you that sometimes it actually does go your way and that in my case, it thankfully did. I was planning a little funeral and it honestly didn't occur to me that this baby would be fine. We have found out we are having a beautiful baby girl. Still a high risk pregnancy with possible preeclampsia but that seems insignificant to me after this week.

Mak84, I am so very sorry for your loss. We had very similar odds and i understand the absolute heartache of the wait. I do hope that you are blessed with a happy, healthy baby when you are ready xoxo

Thank you ThemrsN for sharing your story, your thoughts and feelings... it means so much to me; I am going through the 'wait' at the moment and it warms my heart to hear you are no longer in distress or wound with worry.. My heart goes out to anyone and everyone who is in the mist, emerging from a foggy haze and trying to just keep breathing.

#133 Tinks83

Posted 21 July 2014 - 07:51 PM

I found out on the 4th of July that my NT results have indicated a high risk of Down syndrome and we would need further testing. Hubby and I wish to proceed with the pregnancy regardless so we opted for the Harmony blood test. I had the test last Wednesday so should get the results before the end of next week.

At this stage we have only told immediate family and a couple of close friends for support. We are managing with everyday life without a problem and are very calm. We have a toddler who is almost 2 so is keeping us pretty busy. We feel we can manage even if results come back as high risk still.

I don't know whether I'm so calm because I know everything will turn out no problem or because I know we would manage a special needs child. I honestly never thought I would be in this position after a smooth first pregnancy.

Risk at NT was 1:18 bloods only and 1:63 when combined with the scan.

#134 TardisAngels

Posted 25 July 2014 - 05:51 PM

Hi all :)

Just wanted to post a final update. I had an amnio on 10th July after receiving high risk results from bloods combined with my NT scan. The FISH results came back clear and thankfully the full results have come back all clear as well.

We have one happy, healthy baby in there and to say my husband and I are relieved is a huge understatement :) Now I can try to relax a little and enjoy this final pregnancy.

We still have to keep an eye on the baby and it's growth as well as my placenta function due to the extremely low PAPP-a levels (0.16 mmol) which caused us to be in this situation in the first place. But my OB will definitely keep on top of it and I have faith that whatever happens we will get a baby at the end of this :)

Thanks for all your support - especially Jill (jill1972)

#135 bees-knees

Posted 26 July 2014 - 03:25 PM

Did you get any results @Tinks83 ?

#136 Tinks83

Posted 26 July 2014 - 04:07 PM

I'm hoping to have them by Wednesday, Thursday at the latest. Just a few more days to wait. We are also finding out the gender so I have been spending my time working out fun ways of sharing the news with our family.

Thanks for asking bees-knees. That great news to hear yôu have a healthy baby on board.

#137 AuntyFoxy

Posted 05 August 2014 - 11:28 PM

Apologies first and foremost for a lengthy post....

I just wanted to post my story for any future mums2be who are looking for stories and inspiration in those long weeks following a high risk diagnosis (so many other stories have helped me and I hope I can offer the same).

I'm currently 16w5d; at 11w5d had a neuchal scan (1.9) which combined with blood results from the previous week gave me a 1:18 risk rate for T21.

Beta HCG was 1.354
PAPP-A was 0.313

I am 35 years old and after 4 years of IVF, conceived naturally. (My age naturally pushed me into a higher risk category but the bloods pushed me further to a higher percentage risk.)

I was on such a high even being pregnant (finally!) that it never occurred to me a HR result was even possible! The wind was knocked out of me and I suddenly felt very scared and unsure.

Upon sharing the news with my partner, my situation became worse. It seemed he and I have two very different beliefs on what would be the right course of action if a T21 diagnosis was forthcoming. There was much disruption and confusion in our relationship the past few weeks; firstly over what to do next (have an amnio, choose the less invasive Harmony testing or request CVS).

I was unwilling to risk a miscarriage through invasive testing and so I opted for the Harmony test. Bloods were taken at 13w4d at Charlie Gardner's in Perth. The phlebotomist was such a lovely, caring lady and she comforted me when I burst into tears in the chair as the stress and worry from the recent days overwhelmed me.

I was told results would take approx 2 weeks (10 working days), but for me it was 12.

Sadly my stress and worry was added to as days passed slowly by - it became clear I was looking at a big change in my relationship status if I continued with a T21 pregnancy. I was incredibly upset because it felt like my partner wasn't supporting me at all, but I know he was entitled to his opinion and he couldn't help the way he felt.. As neither could I.

I decided if the results came back positive for T21 (or other), I would carry to term and raise the baby on my own. It's difficult for me to share this part of my story as I don't want my partner judged unfairly, but I could not find any stories where someone's relationship was tested so severely by the 12 week screening and in case any other girl is going through a similar situation, please know you are not alone.

There was a lot, lot, lot of talking and crying in the recent weeks and despite the weeks dragging on, I tried to keep positive and enjoy my pregnancy.. I prayed for my little one to be healthy and tried not to dwell on any negative feelings I had about the testing and my partners reaction. I was more obviously bonded with the baby than he had a chance to be, and so I tried to make sure he was included in any positive baby discussion, dreaming and aspirations as I delved into the project of choosing nursery furniture and reading my pregnancy books.

Today I got "The Call". My Dr's office had rung to ask me to come in for the results. I felt so sick at the words and my heart jumped into my throat as weeks of pent up emotions and tears overflowed. My mind was racing ahead as the nurse said casually, "..oh don't panic it's good news".. To which I reacted so greatly, women from all over the office shot out of their cubby holes to check if I was alright.. I didn't realise I had been so "locked down" and suddenly I felt cloud-light.

I realise how lucky I am to even be pregnant, and for me, no matter what the result I had made up my mind to enjoy my miracle.. still if my experience has taught me anything it's to be acutely aware of the depths of anguish so many ladies must experience around this mark of their pregnancy.. The roller coaster of emotion and constant question carousel in your mind.. Exhausting.

I do not understand how so many brave women can persevere with everyday life in such a period of stress and worry at the unknown. I take my hat off to you - to all ladies - whatever decision you make along the HR journey requires strength.. More strength than you ever knew you could muster.

I send you my blessings and wishes for good news, safe passages for your wee-one and extensive and supportive networks behind you xx

I would like to thank every brave woman who has gone before me to share their journey. Reading your stories gave me hope and kept me busy during the long and lonely nights with just me and my thoughts.



#138 Mum2astar

Posted 06 August 2014 - 04:20 AM

Thanks for sharing AuntyFoxy. That was s beautifully written post. Im so glad your results were positive. You sound like a very strong lady.
I have had my own story here in this section and i often come back i here to read of others. Unfortunatley my results were not good but i since have gone on to have a DD. She is almost 4 months and currently snoozing next to me.
I wish you all the best in your pregnancy and beyond.

#139 AuntyFoxy

Posted 06 August 2014 - 12:09 PM

Thankyou Mum2astar, I was nervous about sharing but I really want to let other girls know that whatever you are going through - however you are feeling - its okay.

I would love to see a photo of your little girl.. I'll bet she is an absolute treasure and the light of your life.  <3  You are incredible, inspirational and just darn-gosh amazing.

#140 Mariafaith

Posted 10 August 2014 - 10:56 AM

Hello everyone! Thank you all for your stories, the good and the bad. We are going thru a difficult time too, we just had our nuchal screen done yesterday, it was supposed to be a happy day but turned put devastating. Our bub has 5.9mm nuchal fold... That is extremely high...

We dont know the bloods yet as we are waiting for the doctor's appointment this wednesday. Most probably we'll go for a cvs. Anyone on Perth here that knows a good specialist/hospital with positive success rates with CVS?

My prayers and thoughts are with everyone too.

#141 ~A2~

Posted 14 August 2014 - 10:46 PM

Thread closed

New thread here




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