Found out today my baby has downs syndrome

[nicki70]

Ladies,

As the title suggests I found out today at 17 weeks pregnant that Bubs has Downs Syndrome. Not a huge shock as we were given a 1 in 2 following the combined screening & I just 'knew' after the amnio that the results would come back positive.

Anyway, definately keeping baby but just want to chat to ladies who have been or still are in 'the same boat'.

What is it really like those first few weeks after baby is born? What are the essential things I need to do/find out before birth?

I live in Farnham, Surrey & I think there are a few support groups nearby...

Oddly I feel excited about baby for the first time in 5 weeks... It's taken that long to decide to do the testing & get the results.

Nicki xx

Welcome to the board :)

Nicki - You seem amazingly positive. I can't give you much advice but my adopted daughters have a one year old half brother with Downs. Their birth mother, who we are in contact with, decided to keep him when she found out. She had given her daughters up for adoption voluntarily ten years ago as she didn't feel able to look after them at the time.

Good luck and this is a great place for help and advice. I am sure there are will be so many mums who can offer you information and help.

Hi Nicki, welcome!

My little one was thought to have an unspecified chromosome/genetic disorder at 20wk scan, although downs had been ruled out.

We found genetic counselling to be really helpful in preparing ourselves for what was to come.

If your babe is likely to spend a bit of time in a special care baby unit after birth (we met a couple of downs babies and their families there) I would strongly advise that you ask to be shown around the unit before the birth. It really helped us. We were surprised at how calm the place was despite machines ringing off all the time. Get somebody to explain to you what will happen immediately after birth. Will baby be taken off for assessment or will you still get a hold straight away. That sort of thing.

Sure you'll get lots more good advice here!

hello Nicki Dd3 has a genetic syndrome (not Downs) but it wasn't picked up until after she was born. I think as you've mentioned, get in touch with local support groups now, don't wait until your lo arrives, they'll be able to tell you how things work where you are, a little local knowledge goes a long way.

Just a flying visit to say Hi. I am the mother of a 10 year old with down syndrome. I found out after he was born though....after they found his heart condition. You sound fantastically positive..keep it up x

Hi Nicki

Welcome and congrats on your baby

Sending pixie dust for you and baby!

Hi. My dc has other issues, but I've had contact with the downs syndrome association for other reasons, and found they were a great bunch.

Forgot to say welcome and congrats on the baby! Did you ask whether they're pink or blue?

congrats on your baby, you will get heaps of support on here

Welcome to the Board Nicki and congrats on little bubs x

congratulations on your baby.

Welcome to the board and congrats on your baby

Hi, haven't posted for a while but am parent of boy with DS who is nearly 6. I found out after he was born and he had no heart problems. He is my second child and I found it very difficult to stay pregnant so I had quite mixed emotions when I finally managed to stay pregnant and have him. I found that the first few weeks and months were pretty much the same as when I had had my daughter. He was a bit smaller and his head control a bit weaker but essentially he was just my lovely baby and he is now my lovely son. There are issues that have arisen as he has got older but they are just different ones to those that have arisen with my daughter. Every child is different, he has no health issues so we take every day as it comes. I really enjoyed his baby time so make the most of it, have fun and go out to as many baby groups, music groups, all those baby play things that you can, make some friends with other mums and just enjoy being mum. sorry to be so long, congratulations on having a baby and good luck!

Congratulations on your baby.

DD2 has genetic disorder but not Downs.

I'm sure you'll get lots of support on here as and when you need it. I would suggest you consider every offer of help and support from anywhere you come across.. and find some groups with other families with new babies who have Downs if you can, they'll probably become lifelong friends.

Take things day by day, enjoying the early baby times.. Good luck!

Thank You!

I do feel a sense of relief now we know for sure, but sure we will have to go through some grieving at some point as our baby is not the baby we'd expected (after years of trying & 3 IVFs...) but am honestly just excited that there is going to be a baby.

We've had a fetal echo done already & luckily there doesn't seem to be any heart problems. We'll know more at our 20 week scan I guess.

So onwards & upwards!

Look forward to chatting more in the future.
Nicki xx

Welcome to SN nicki. If you search on the name eidsvold you will find lots of posts from over the years - she has a dd with DS and she also found out when she was pregnant.

Welcome to the board and congats, I am loving your attitude but expect down times as well as up.

I understand the sense of relief at an answer: ds3 was very high risk for DS and just getting an answer was a huge relief- in fact he dosn;t have DS but he ahs ASD so it was probably good preparation for a slightly atypical parenting journey!