NIPT positive for DS. What next?

[Spink]

We had a phone call this afternoon to confirm a positive test result (99% probability of downs).

I called my NHS midwife & she said she'd pass a msg to the screening midwife, who'll call me prob tomorrow or Weds. We have our NHS 12 week scan on Weds.

We think we want to have this baby, but I'm scared & don't know how to start to get my head around it all.
We've got 2 dc, ds is 10, dd is 8. Both v excited about having a new sib. We haven't told them about the test results yet.

I'm 13+4. Our baby is a girl :)

Congratulations on your pregnancy OP. I have a 6yo with DS (postnatal diagnosis) who is a beauty and a wonder. It's not plain sailing but it's still brilliant.

Have a look at this survey of NT siblings' feelings towards their bro or sis with DS. Not bad, eh? My NT child's teachers say he is more compassionate and inclusive towards his classmates than they would expect a child of his age to be.

Education opportunities for children with DS and understanding of their learning profile have improved massively in the last 30 years. Have a look at some of the articles and resources on here. They might put your mum's mind at rest too.

Congratulations on your pregnancy!

I've got a 3 month old dd with DS. Like you, we found out by NIPT. She's just had surgery for her heart problem (AVSD). I'm not going to lie, it's been a tough few months - but it's all been worth it. She is so gorgeous and has such a lovely personality. I found the pregnancy tough, but if I'd have known then just how wonderful dd is, I would have felt differently.

I'd really recommend finding a local family to chat with. It really helped me to meet some DS kids and families.

Hey. :)
That's my blog, I'm glad it helps. That's exactly why I wrote it.
You're in the roughest place now, no baby to hold yet, just a label to worry about and a whole load of trepidation to try and keep a rein on.
It gets SO much better, honestly.
I have never regretted the decisions that I made. Not for one moment, even in the midst of her open heart surgery. And I promise you that her siblings don't resent her in any way. I have had contact with many, many people who's children have DS, and I have never heard one of them say otherwise.
I have a friend who recently started an awesome charity. Its called Trisomcare.co.uk. Its aim is to match expectant parents with parents in their local area, for peer support. Please take a look. I'm going to send you a little PM, please have a peek.
Try not to worry. Everything is going to be okay. xx

SunnySideDownup I remember posting in a thread you posted a while back, I am so glad you're doing well. :)

Hey Saggy thanks for the lovely DM, I will certainly take you up on the offer :)

Happy - Slightly belated - World Down's Syndrome Day, folks! I hope you all were rocking your 'lots of socks' whilst the little ones were rocking their extra chromosome!

:) oh yes

I have a happy update, just in case anyone reads this! We had our 20 week scan today & no problems were found, so hopefully our little girl won't have any serious physical issues. So lovely to have a positive scan! Today at least, T21 feels less like her defining feature- we're having a scrumptious baby!

Yay, that's fantastic news! My DD was the 1 in 1900, and I think maybe the reason why nothing was picked up in the 20 week scan was that she has no heart or other health issues, something I've felt intensely grateful for ever since. It's heartbreaking hearing what the kids (and parents) go through during open heart surgery etc. Although that said, the other children I now who had heart surgery when little are now doing brilliantly 💖

This is such a lovely thread. It's so great to see so many positive stories; good for everyone. I think DS has a very negative press generally so this really helps. As a nurse I've seen children with all sorts of health problems, physical and mental, and believe me there are far worse things that can happen besides Downs.
So pleased your scan went well, you sound very upbeat now which is great.

I'm so happy I've found this thread, hope you don't mind me joining in.

I'm currently 29 weeks pregnant with our little girl who has downs. We were given a 1 in 7 risk at 16 weeks following a blood test (NT measurement wasn't possible at 12 weeks- little wriggler!) It honestly felt like the end of the world which seems silly now, but refused any further tests as we wanted them no matter what. We had two 20 week scans (19+5 and 20+3) to double check the heart, which despite my heart problems she passed with flying colours, but they noted the long bones were short. However, we relaxed knowing that apart from the bones, she looked healthy.
An addition scan at 24 weeks to check her growth gave us devastating news: she had developed hydrops fetalis, fluid was pooled around her heart and lungs, slightly in her abdomen as well and under the skin round her skull. At that point the docs said she had around 10% chance of surviving to birth without intervention. They would risk doing invasive in utero procedures to drain the fluid from her chest if genetic screens were normal. We decided we had to have the amnio to find out for sure to give her the best chance, but the results confirmed DS and we were told any intervention she would likely not survive.
That was 5 weeks ago, since then we have had weekly scans to check her progress (for the third time during our pregnancy they asked if we wanted to continue, and we told them categorically we wanted to do everything possible to bring her home safe) Last week we had a miracle, fluid has decreased dramatically, indicating she is dealing with it by herself, the little fighter!
After the shittest month of my life we're now relaxing slightly and looking forward to meeting her and bringing her home in a few weeks. Not out of the woods yet but her chances have gone up dramatically :-)
This has really cheered me up reading your positive stories, I honestly think nothing can phase me now, having stared down the very real possibility of loosing her; I'm ready to be her momma.

Hello Winnie! You are very welcome to join! Blimey you've been going through it. I found myself holding my breath reading your post- I'm so so happy to hear your little girl has made such brilliant progress. Here's to a straightforward rest of your pregnancy & no more scariness.

I know what you mean about looking back at the time Downs was first mentioned.. and how different it feels now. I really look forward to hearing how you get on! Do you have any idea whether you're likely to carry to term or she'll be born early?

Xx

Hi!
Straight forward would be great yeah 😀Originally we were aiming to get to 35 wks before they discussed when and how best to deliver, with 37 wks being the real target to minimise complications from being premature, but they weren't honestly expecting she to survive that far, she's proved them wrong though!
Next scan is on Tuesday and we'll discuss what the plan is now. Hopefully they will just continue to keep a close eye and let her come in her own time

Another update :)

Dd arrived safely and is now a gorgeous nearly-4-month old. There have been a few health issues which are related to DS, but nothing too worrying or troublesome :)

She is a complete sweetpea. She is a BIG smiler & babbles away merrily when we talk to her. She absolutely loves having baths & gets blissed out having water dribbled over her head. She is so loved.

I wish I could travel back in time to the me who first posted on this thread, give her a huge hug & let her know that it won’t just be ok, it’ll be great.

Thank you to everyone who posted with such warm support. It was so very appreciated. xx

She's beautiful! Congratulations

Thank you Blah!

She's beautiful! What a smiley girl. Congratulations

What a lovely thread - congratulations spink! She is beautiful

Oh I’ve got a tear in my eye! What a wonderful outcome and she’s so beautiful. Congratulations x

What a cutie pie. Congratulations!

She's absolutely gorgeous.

Congratulations OP 😊

My eyes are leaking.
What a beautiful baby girl you have.

She is gorgeous! Wishing you much love and laughter x

You are all so lovely! I am welling up at all your messages, thank you :) x