16 Weeks Pregnant - DS Diagnosis

[lady emz]

I am 16 weeks pregnant and after a high risk of 1 in 5 for DS after the first scan and blood tests, we have recently received the results from our Harmony test (NIPT) to say our baby has DS.


Does any one on here have a child with DS? We have decided of course to continue the pregnancy, declining the amniocentesis as that would not change our decision. We are just trying to come to terms with it all, and try to prepare for our new life when the baby arrives in April next year. I just keep crying for the last few days as am finding the unknown hard, I am a planner! We have a heart scan next Friday at UCH in London so we are in good hands. I guess we won't know the full extent of disabilities or any heart problems until birth though?


We also have a holiday to WDW booked for October next year when the baby will be 6 months, which we deferred from November this year due to the Zika virus risks, guessing it will be a decision to make nearer the time as to whether or not we can go?


Thanks

[meboo]

I have no direct knowledge. I am sorry that you have received this news. I do know that like many conditions that there is a whole range and spectrum, in terms of both health conditions and mental capacity. For example, I was at school with a girl who had DS and she completed education up to A Levels. I have a friend who's son completed primary mainstream but did not go to mainstream high school. He is 15 and currently doing day release from school in a garden centre, so his education is being focussed on practical skills. I'm sure once you hold your precious baby in your arms, you will fall in love & find your way as all new parents do.

There was a BBC documentary a couple of weeks ago with Sally Philips, whose son has DS - this will still be on iplayer. you can see some real-life families on there. Best wishes x

[BLDY&McGoo]

I dont have children as you know but I hold my hands up in congratulations to you that you are continuing with your pregnancy as i dont feel anyone can know what they would do in this situation or imagine how you must feel.

Whatever your choices or where the path your destined to take leads you, you will adapt and make adjustments to your life as with any other child. Theres no point in dwelling on the bad points but some downs children are really on the ball and lead incredible lives that years ago doctors wouldnt have dreamed of

Big hugs x

[Guest]

Again I have no direct experience but just wanted to say it's completely natural for you to be teary as like you said it's the unknown..wishing you and your bubba the very best,I'm sure you'll go on to have some wonderful Disney holidays as a family xxx

[wozza]

downssideup/?m=1

Sending lots of love. X

[disney332]

My daughter works with adults who have DS?

They are the nicest, loving, giving, warm, funny and most genuine people that God ever placed on planet earth.

Disney332

[Bazinga 39]

I have no advice or knowledge either just wanted to wish you well for the rest of your pregnancy x x

[lady emz]

Originally Posted by meboo

I have no direct knowledge. I am sorry that you have received this news. I do know that like many conditions that there is a whole range and spectrum, in terms of both health conditions and mental capacity. For example, I was at school with a girl who had DS and she completed education up to A Levels. I have a friend who's son completed primary mainstream but did not go to mainstream high school. He is 15 and currently doing day release from school in a garden centre, so his education is being focussed on practical skills. I'm sure once you hold your precious baby in your arms, you will fall in love & find your way as all new parents do.

There was a BBC documentary a couple of weeks ago with Sally Philips, whose son has DS - this will still be on iplayer. you can see some real-life families on there. Best wishes x

See more...

Thank you, yes we had our scan 2 days before this documentary so we watched it, it was the test she was talking about that we had actually, just not for the reason that many people have it, we just wanted to know so that we had time to prepare before the birth

Originally Posted by BLDY&McGoo

I dont have children as you know but I hold my hands up in congratulations to you that you are continuing with your pregnancy as i dont feel anyone can know what they would do in this situation or imagine how you must feel.

Whatever your choices or where the path your destined to take leads you, you will adapt and make adjustments to your life as with any other child. Theres no point in dwelling on the bad points but some downs children are really on the ball and lead incredible lives that years ago doctors wouldnt have dreamed of

Big hugs x

See more...

Thank you, I won't lie and it hasn't been easy, I still doubt now how we will cope, the impact it will have on Mason who will be almost 3 when the new baby arrives ... so many thoughts running through my head and another 5 months of pregnancy to go ... I need to get back into a positive mindset, we are still very lucky to be pregnant, some people are not so fortunate, and we are extremely lucky to have Mason who is perfectly healthy and I sure will grow into the best big brother. Just a bit emotional about it all at the moment ... not helped by pregnancy hormones either! xxx

Originally Posted by Scotsmomma

Again I have no direct experience but just wanted to say it's completely natural for you to be teary as like you said it's the unknown..wishing you and your bubba the very best,I'm sure you'll go on to have some wonderful Disney holidays as a family xxx

See more...

Thank you, I can't wait to go to Disney as a family of 4 one day I am sure it will be more than worth the wait xxx

Originally Posted by wozza

downssideup/?m=1

Sending lots of love. X

See more...

Thank you will have a look at this after work, can't get teary again! x

Originally Posted by disney332

My daughter works with adults who have DS?

They are the nicest, loving, giving, warm, funny and most genuine people that God ever placed on planet earth.

Disney332

See more...

Thank you, that is what I have heard too, need to try and find some local DS groups that we could go to before the birth I think

Originally Posted by Bazinga 39

I have no advice or knowledge either just wanted to wish you well for the rest of your pregnancy x x

See more...

Thank you x

[charleion]

Didn't want to read and run, sending love and well wishes x

[Stitchfan626]

I've no direct experience either, but wanted to say how sorry I am for your news and also to say how much I admire your attitude. You sound like a lovely, caring family and this baby will be loved and cherished.