CVS result positive for T21

[Rialtovenezia]

Hi I'm a new member. Have recently had my CVS result back as positive for T21 and to be honest I'm a bit all over the place. Our 1st reaction was to terminate. Doc when he rang with the results (we asked them to if they came in early) said we should go back next week to discuss things and if we want to "not continue" that they can arrange this straight away.

We're both so confused at the moment. On the one hand just see the image of the little baby I saw on the scan before they told me there was an issue with the nuchal translulancy (5.3mm), and that there are so many things that baby could have that we wouldn't know about until after birth so why should this make a difference.

Been trying to get as much info as I can off the net to make an informed decision. Some makes me feel more confident that this will be ok and we can cope, but then find lots of info about everything that could go wrong and how it seems to be a constant battle with healthcare and social care professionals. The last two mornings I've woken up with the most terrible dark thoughts of wishing that nature would intervene so that I wouldn't have to make the decision.

I never ever thought my pregnancy would go this way and I think I'm making myself worse because I've had loads of girlfriends over the past year have babies without these sorts of issues. Guess I'm in the 'why us' phase at the moment. So sorry to ramble at you all. Just hoping that there's someone else out there who's been through the same thing or going through it. Can talk to OH, but we haven't told family or friends so it feels a bit isolating at the moment.

Yes, it is totally unfair .
There are lots of people on MN who if they see this will tell you all about their own very positive experiences of being the parent of a child with T21.
Search for the user name = Eidsvold, for instance.

There are threads on here, too, supporting women who chose to terminate (for T21 or whatever).

hth.

So sorry you are having to go through this, it's not a decision anyone should really have to make is it?

I terminated my first pregnancy last year after a CVS revealed turners syndrome which in my case would have been fatal for the baby. I guess in some respects that made the decision easier, although not at all easy.

I can't really offer any advice on T21 and the implications for the child or your family but i'm sure there are lots of people on here who will be able to help. Whatever you do find out though don't feel pressurised by people, just do whatever is right and best for you.

Good luck i wish you all the best, Katie xxx

Hi There

I feel for you so much a this time Rialto as the same thing happended to me - in fact it is a month to the day that we got our CVS results confirming Trisomy 21.

It is such an overwhelming and confusing time and irrespective of any decision you may make it marks the end of the kind of pregnancy and the kind of life you thought you were going to have a few weeks ago and its very difficult to see other pregnant woman around who are seemingly free of worries and troubles without feeling envious.

I will say though that it sounds like you are approaching it in a really focused and informed way and I wish you all the luck and llove as you and your partner decide what to do. As lljk has pointed out there are lots of women on here who I am sure would be very hhappy to share their experiences (if they don't see your post then perhaps you might seek them out on the special needs threads). Or perhaps there is a local support group you could approach?

I was hesitant about responding to the post aas we personally made the decision which was incredibly hard and heartbreaking to end the pregnancy but I am fully aware that there are many people on Mumsnet and in real life who wouldn't make the same decision. To this end I think the best thing you can do is find out as much information as possible and then be scrupulously honest with yourself about what you believe will be the best decision for your family.

I wish you all love and luck in deciding how to go forward.

Hi Rialto

So sorry you are going through this.

There are parents on here with children who have Down Syndrome who are happy, healthy and living a pretty full life, another one to search for is thomcat. If you are looking for examples of positive experiences you will find them, and certainly living with Down Syndrome is 'easier' than it used to be in the sense that DS children are included as much in school etc as they can be and the medical support is better.

However, it's also worth bearing in mind that organisations like the Down Syndrome Association have a vested interest in promoting the positive - and it's very hard to get a balanced view on Down Syndrome and what the real day to day challenges can be if you have a particularly sick child.

Perhaps talking to some adults with Down Syndrome may help you make a decision, or to a paediatrician?

Is this your first child? That may have a bearing on your decision too.

I faced the same devastating news as you back in January. We had the decision taken out of out of our hands somewhat as our baby was so sick there was already fluid collecting around his abdomen which indicated imminent heart failure. We were told I would certainly miscarry, or deliver a stillborn, and since we had a toddler to think about too, we decided to opt for termination rather than wait for nature to take its course.

Some figures say that as many as 70-80% of pregnancy where Down Syndrome is diagnosed at the nuchal scan/CVS, and then are not terminated, end in miscarriage or stillbirth. I say this not to scare you but had we not known our baby was certainly not going to survive, these figures would probably have caused me to make the same decision anyway.

I had a surgical termination under general anaesthetic. It was emotionally traumatic of course (and still is), but physically not too awful and I recovered quickly.

From reading threads on MN, you would think that nobody would ever terminate a pregnancy under any circumstances, but the truth is that 92% of of women do choose to terminate if they get a Down Syndrome diagnosis. I don't know if this is right or wrong, and of course parents who have children with Down Syndrome will probably feel very strongly that it's wrong, but if you do decide to end your pregnancy, just know that you're not alone.

Sorry if some of the things I've written are hard to read, I just remember how difficult it was finding information and first-hand experience when I was going through it.

Thinking of you.

Hi just read your post and wanted to post but am very busy at the moment so will come back and check and give all the help you need.

Quick summary: ds1 6 years Downs syndrome diagnosis at birth (i was just 27) and was devastated and have taken time to come to terms with it.
ds2 5 years and dd1 8 months.

There are some treads you may find useful but i don't know how to link them (the funny thing is that ds1 probably could)!.

-one on antenatal tests was "1/49 on triple test and terrified" by Mainer on 19th April

-one on special needs children "Help for baby with downs syndrome" By Onesheep on page 5.

Also search on Mumsnet talk for downs syndrome I'm sure that these past treads will give you loads of info.

Promise to be back and help if poss and don't worry I'll be totally non-judgemental about any discission you go on to make.

Hope it helps......off to sort out tea!!!!

I would be happy to talk to you about my own experience if you feel it would help.
My DS was diagnosed with down's via amnio at 16 weeks pregnant we decided to continue with the pregnancy, DS is now a happy, healthy 21 month old.

I take calls on a local NCT pregnancy help line talking to women who are high risk or have screened positive for down's so am respectful of any decisions made. I do however feel strongly that couples should be given relevant, up to date information about the condition diagnosed.

I can totally relate to you wanting nature to take it's course, the anger, the "why us" and the dark places you may find yourself in but I can honestly say now he is here it is nothing like how I had imagined, it's different sometimes but so much better.

Take care, and I'm happy for you to email me if you need to talk as I know this can be such a confusing and difficult stage.

I have an almost 8 yo with down syndrome and we knew before she was born that she would have down syndrome - we were told at a fetal cardiac scan at 21 weeks that is she was born without down syndrome it would be incredibly rare. For my dh and I it was no decision to be made - this was our babe - our little girl and she would be born. We had very positive experiences of families who had children, adults and young adult members who happened to have down syndrome.

My daughter attends mainstream school - she has two siblings. We never thought she would ever be an only child - well that was our plan - luckily we were able to have more children. She is doing amazingly well. She participates in mainstream dance class, she swims, is in the junior choir at school. She surfs! She is desperate to try out for football ( soccer here).

She was born with a heart defect and at 8 weeks old underwent two open heart surgeries to repair that. I have to say that was probably the toughest 3 weeks of my life - and you know what - lots of other parents were there walking the same road whose children did not have down syndrome and in fact had much worse health conditions than dd1. In fact she has never looked back. Once her heart was repaired her health has been brilliant. SO the point that someone else made regarding if the child has health worries - so many other children who do not have down syndrome live with that.

My dh found it really helpful to talk with ppl at the Down Syndrome Association about down syndrome and lot of other stuff.

www.downs-syndrome.org.uk/

www.downs-syndrome.org.uk/information/being-pregnant.html

They were in no way judgemental or baised actually but were able to answer his questions with honesty and from a position of knowledge and experience. I found talking with parents who had been where we were and beyond very helpful.

I am a new parent supporter here where I now live and I have supported a number of families who had had babes with ds.

You know what - sure ppl who are given a diagnosis of down syndrome are more likely to terminate than not BUT it often comes from a position of ignorance or outdated information.If you want to look at statistics where ppl have a personal knowledge or experience of down syndrome they are more than 60% likely to continue with the pregnancy.

Our determination/ aspiration for dd1 is the same as dd2 and dd3. She will grown up, leave home, have relationships, marry, have a job she likes and be surrounded by friends and be happy. TO us- the only boundaries she faces are those imposed by others. Our toughest time is fighting the ignorance and petty mindedness of other ppl. I would not change who she is for the world. She is not defined by her down syndrome - it is but a small part of a wonderful personality - and fwiw - she is so much easier to parent than my other 2. SO much easier.

might find helpful

very good info regarding continuing with a pregnancy post diagnosis

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This was written by a lady who has a child with down syndrome and to me it so eloquently expresses how I feel. Down syndrome is not something to be shunned or feared but something that opens up a whole new world to explore and enjoy. In fact I think without dd1 I would have been so far up my own arse it would be unbelievable.

the babe in the picture at the top is my dd1 at 1yo