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Support for High Risk NT Results #45

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Megans21

Hi ladies! Just a post to let you know there is a facebook group called T21 Mum Australia with a prenatal support group. I have a beautiful nearly 2 year old with down syndrome she is a very healthy happy girl

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Blue Lavender

Milly and Elle. How are you doing?

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MillyM

Thanks for checking up Blue Lavender. We did not get good amnio results - our bub had a very rare genetic disorder then I miscarried.

Elle I hope you are ok.

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Blue Lavender

I'm really sorry milly m.

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Blue Lavender

I'm really sorry milly m.

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Elle_

Milly M, I'm so sorry!!!! I hope you are coping ok. Make sure you look after yourself xx

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Elle_

Thanks for checking in Blue Lavender. We had our early morphology test today and it was a perfect scan. Heart looks normal and everything else looks fine too, the nuchal was back down to normal range so it was a good result. They said it up to us if we want a amnio, chances of anything wrong have now gone down to a 5% chance. I'll chat to the ob at our appointment on Thursday about what he thinks but Im feeling a bit better about it all.

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AdelTwins

Another update. My little man is 2 months old now. (NT was 4.2)

 

We've had some issues with him being intolerant to something in my breast milk. He was bleeding from his bowels! I tried an elimination diet for many common allergens for a month, but sadly he was getting too sick. It took him over 4 weeks to put on his birth weight and he was quite tired and pale. We've put him on prescription formula full time and he is now gaining very well and catching up. He smiles and is just a lovely little boy.

 

I wonder if the high NT was related in any way. Only time will tell. So far we have no other health issues and he is meeting all his baby milestones.

 

I hope you are all well. Sorry to those members that have experienced losses. I've been there... there are no words.

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Megans21

nnn

Edited by Megans21

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~buzz~

Hi I haven't posted here before.

 

I am currently 12 weeks 2 days pregnant. We had our NT ultrasound 2 days ago and received a call from my GP to come in for an urgent appointment that same day. We were told that there was an excessive amount of fluid around baby's abdomen and lungs, fetalis hydrops. I was referred to the local antenatal clinic and had an appointment this morning, The results of the combined screening showed 1 in 12 risk of trisomy 21, 1 in 3 of trisomy 18 and 1 in 5 of trisomy 13. I have been referred to a bigger hospital for a CVS and told we will go from there depending on the results. I am feeling quite devastated at the moment and just wanting to find people who have been there and what your results ended up being.

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MillyM

Hi Buzz. I'm so sorry you find yourself here. While I'm not familiar with the possible diagnosis you have received, I have been there. We had a 1:8 after our NT and unfortunately it was a fatal condition. We found this out after the amnio. We chose to do the Harmony test for the trisomies after the NT and the Harmony was all clear. But the amnio brought up other issues. One option for you would be to have the Harmony - it's costly but you will get the results quickly. The worst thing for me was the rollercoaster of emotions. We'd get some good news and think everything was ok, then some bad news, then some good news and so on. It's absolutely exhausting and the worst time of my life. I'm sorry I can't give you more positive news. There are people on this site who have much better stories to tell you. Sending you lots of strength and hugs to get through this time xx

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~buzz~

Thank you MillyM and I am so sorry for your loss.

 

I was told not to worry about doing the harmony as it won't officially diagnose so would need to have the CVS or amnio as well. It has been a very emotional week and while I am trying to remain hopeful and positive it has been hard. I feel like I have put the rest of my life on hold while we wait for news, I haven't been to work all week or done much beside sit around the house and attempt to parent my older children.

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MillyM

Buzz, I was exactly the same. Everything was on hold while we waited. The reason we did the Harmony was to rule out the trisomies, which it did. But we were waiting 2 weeks for the amnio while a cvs would be quicker. While parenting your older children feels like the last thing you want to be doing, looking back it was the only thing that got me through. I had to function for my child, who saw more than their fair share of tears from their mother. Do whatever you need to do to just survive this time. Xx

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~buzz~

I ended up having the CVS last monday and FISH results came back as normal which was obviously a huge relief, we are still waiting on the full results, should have them at the end of the week, and if they are normal they want to start looking for other reasons for the hydrops, most likely a heart defect.

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ekin8288

Hi everyone I'm new to this last tues I got my results of 1:109 for ds and 3mm measurement. I'm 36 I'm just so worried atm.

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bees-knees

That must be really stressful for you @ekin8288. Just wanted to say that I have an 8yo with Down syndrome, and I'm happy to answer any questions you might have.

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Bug2019

Hi ladies,

 

We have had our Nt ultrasound scan and bloods and have been given the news we have a 1 in 68 chance our baby has downs. We have a specialist appointment at the hospital today to discuss options. Wondering if anyone is in the same boat, or previous pregnancy had high results and everything turn out okay and if you went ahead with Cvs testing or waited for an amniocentesis to be done later. Terrified of miscarriage from either procedure, terrified of having a positive result and having pasted the point of a surgical D&E and having to go through labour to deliver the baby :(

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just roses

Hi ladies,

 

We have had our Nt ultrasound scan and bloods and have been given the news we have a 1 in 68 chance our baby has downs. We have a specialist appointment at the hospital today to discuss options. Wondering if anyone is in the same boat, or previous pregnancy had high results and everything turn out okay and if you went ahead with Cvs testing or waited for an amniocentesis to be done later. Terrified of miscarriage from either procedure, terrified of having a positive result and having pasted the point of a surgical D&E and having to go through labour to deliver the baby :(

I’m sorry for what you’re going through. It is very stressful.

 

It’s 7 years since I was in the same position. And there’s an option you haven’t considered. Chances are your baby is ‘normal’. But even if he/she does have Down syndrome, that’s not the end of the world. I was so scared when I got my NT result that I was wishing for a miscarriage. But I forced myself to investigate Down syndrome and came to the point of acceptance.

 

DD didn’t have Down syndrome in the end, but by the time she was born we had moved past the fear sand felt prepared for any outcome.

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bees-knees

Hi ladies,

 

We have had our Nt ultrasound scan and bloods and have been given the news we have a 1 in 68 chance our baby has downs. We have a specialist appointment at the hospital today to discuss options. Wondering if anyone is in the same boat, or previous pregnancy had high results and everything turn out okay and if you went ahead with Cvs testing or waited for an amniocentesis to be done later. Terrified of miscarriage from either procedure, terrified of having a positive result and having pasted the point of a surgical D&E and having to go through labour to deliver the baby sad.png

 

I'm probably way too late for this - I assume you have results already but I just wanted to say that I have a 9yo with Down syndrome and if you receive a positive result for Ds, and would like to talk to someone about what it's like to parent a child with Ds, I'd be more than happy to chat.

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