Just had amnio result - would welcome some support

[dreamingoflamu]

hello all
Sorry to bring a sad thread to the pregnancy board. Last week at our 20 wk scan our lives changed completely when we were told our babe had a serious heart condition (AVSD), we then saw specialists who confirmed this and found several soft markers for downs also.
Had an amnio last Tuesday and after the most hideous wait I have just been told that I am carrying a downs baby. I feel calmly numb at the moment - but there have been lots of tears over the last few days. We have a huge decision ahead of us, one I wish I could make go away.
I've done lots of reading, contacted support groups and have read archived MN threads which have really helped. But I could really do with some words of support, I'm so scared no matter which route we take.
we have a 17 month old ds who is keeping us sane and even smiling, but would really welcome some wise mn words
thanks

no, my heart hasn't found its place yet. its as if I'm swaying more frequently, it was day to day now its closer to changing every few hours.

have you been in touch with ARC and/or the DSA?

Oh God you poor thing.

Oh Dreaming....a close friend of mine went through this a few years ago, and then again two years later. I'm so sorry you're faced with the situation, and the decision. Just wanted to add support....xxx

(((((((((((((((((((((((Huge Hugs)))))))))))))))))))))))))))

still thinking of you.

My Dp has just nipped out to get me some chocolate - that will help.

Got the ARK leaflets yesterday and they have been read several times over. Had another long chat with DSA today. Really nice. Talked mostly about how life is for people with downs as they get older, and how that situation might be in the future. Have a number to talk to someone who has been through the same thing but am a bit blank as to what to ask really.

I'm going to disappear for an hour or so. will be back later

Will check in later then to see how you are then.

Hope it's Green & Blacks chocolate, the butterscotch one, if not send him back out!

ah well, if in doubt, have chocolate.
Glad to hear you're getting good support from the relevant organisations - at least you will know that whatever decision you make, you have made the most educated choice you can.

I can only imagine how hard this. At least I had a baby to hold as well as deal with all the bad news, and didn't have to make any decisions.

Message withdrawn

Oh myermay, I understand your post but am so saddened by it, and it just makes me realise that there is still so much to do in educating people.

I'm glad you have learnt something from this thread .

No-one pitties me or Lottie.
On the other hand I sometimes feel sorry for other people, the ones that don't have a Lottie!

Of course our children are all gorgeous, they all look like their mums
No reason that they would look any other way and they wear the same as anyone else and will follow music, trends, fashions like anyone else as they grow up.

People who have Down's syndrome are just like anyone else, they just have one extra chromosome and it takes them longer to learn stuff. The majority of people with Down's syndrome live independently, go to mainstream school, further education, hold down jobs and so on. I've long stopped being surprised stories like - I know a girl whose mum lives in London, she lives in Brighton and is a band and loving her life. That was so amazing to me at first but now I realise it's actually really not that unusual.

hi dreaming. I read your thread yesterday, but couldn't find the words to post anything terribly sensible. I just wanted to say a couple of things...

1. is it worth factoring in how 'easy' you and dh conceived ? You're still relatively young, so you might feel that you would stand an excellent chance of conceiving in the next six months to a year if you were to terminate this pregnancy. Alternatively, you may also feel that your age meant you were not 'too old to cope' IYSWIM. You are young enough that if you had this baby you would likely be able to summon the mental and physical strength to move forwards in caring for them including any special needs / health implications. Additionally, you are young enough that if you felt you somehow 'missed out' on your second child being NT (I think some people do, some people don't) you might feel able to try for a third baby at some point in the future.

2. Regardless of the decision you make, I don't think that one needs to necessarily attempt to achieve 'consistency' in one's rationale... for example, you may have felt 'more able' to have a termination on a younger fetus had the 12 - 14 week Combined / Triple Test / amnio revealed a baby with a chromosomal abnormality than you do at 20 - 22 weeks. I don't think that is necessarily inconsistent or irrational IYSWIM. Alternatively, you may perhaps consider the fact that the abnormality wasn't 'revealed' just highly highly unlikely (your 1 in 970), but that now this abnormality has been revealed the (very hard) decision to terminate should be taken IYSWIM.

Finally, I'd like to reflect / acknowledge one series of almost 'contradictory' thoughts that I think you might be having regarding the impact on your son in the future: On the one hand you risk him possibly feeling 'burdened' by his brother or sister (in the short term with teasing / bullying / needing to perhaps do different activities etc. and in the longer term as you and dh age, with added responsibilities he may have wrt his brother or sister). And on the other hand being acutely aware of the possibility your baby may greatly enhance the lives of all your family and friends in a great many ways, as has been made clear by several other posters who have DS children.

I know I'm not really posting any advice, just thoughts. I just wanted to share a little about what I'd been thinking. X

TC, that reminds me - I saw a friend last week who had just just come back from holiday (Malta). He'd met a young lady with DS there who had recently passed her driving test and was a complete ace at waterskiing apparently.(not something I have ever mastered!)
And at the weekend I noticed two girls in Starbucks - one with DS, one without. They were both very trendily dressed (juicy couture or whatever it's called?) and having a giggle over their coffees. I do have a bit of a 'spot the adult with DS' habit going, I must admit.
So much progress has been made in the past 15-20 years, I do believe that our generation of children has the chance to have a bright, fulfilled future.

One of dd's school friends has an aunt who is downs... She has had all sorts of ups and downs with her health but is a truly remarkable person. I got upset at school today my dd was ill and I am having an off day. This lady was just the best comfort to me and you can almost forget the downs is there. I have known her for about 2 years now and I am sincerely glad to have her as a friend..
Sometimes downs isn't as black as is painted and although I am not a downs parent (dd1 has asd a challenge in itself) I can see the good side of this. Keep smiling and you will get through

dreaming - if you want to call the other person - don't worry about what to say - just say what is on your mind/heart - they will not be concerned iyswim - they will just talk and more importantly jsut listen.

I guess what made it easier for us is they originally told us dd1 woul dhave a more serious and life threatening heart defect which would have meant a number of open heart surgeries in her first year and then ( if she survived) the need for a heart transplant as a teenager.

When we had the fetal cardiac scans and they told us it was an AVSD and how it could be repaired etc - I almost laughed with relief. Cardiologist thought I was a very strange lady until he read my notes and saw what the local hosp ahd suggested.

So the news about the down syndrome was still sad BUT we figured we could deal with it. We had already decided that this was our baby and we would have her - so it made our choice a little easier as we were originally facing something mroe 'difficult'.

We have just had two young couples ( with down sydnrome) get married this year - so gorgeous to see.

Enjoy your choc.

dreaming, if you CAT me, I can give you my friend's email, if you think it might help to talk to her/ask her questions.

Hi again
It was green and blacks. Got hot chocolate too. Feel much better

Your are right Eidsvold she probably would be able just to talk, and I would get comfort from hearing my thoughts said back to me by nother person. I should ring her. I'll see how things go tomorrow.

Hub2dee - its very comforting to know someone has thought so much about our situation. And all the other mums too - Thanks for coming back and checking on me.

So we've made a bit of a step forward but not a decision. All we have learnt about downs has been mostly reassuring rather than alarming, to the point that we think it would be very hard at times but we could manage it. I think we are now looking at whether it is right to bring this child (who happens to have downs) into the world in our current circumstances, rather than could we have a baby with downs at all. Of course its not as clear cut as I'm able to explain this, with the heart condition, and the spectrum of severity of downs there is a huge element of the unknown. I hope you understand what I am trying to explain - its a fine destinction but feels a bit like a step forward.

eidsvold thats a really interesting perspecitve. Its true downs and AVSD isn't the worst that could happen - by far. I was saying to a friend today that this isn't the worst thing that could happen to us, and that life can deal much harsher blows than this. I've seen enough of the world and how life can be to know this, and gain comfort and strengh frm that.

been following this thread. when i was pregnant with dd3, i was offered loads of tests. i turned down amnios and CVs etc, but did have a fetal cardiac scan due to my husbands heart problems. the thought of a baby with a heart problem was the most worrying thing for me, not anything else. I knew that if the scans showed anything then at least we'd be prepared. tbhm havign a baby with downs syndrome wasnt a worry (dd3 does have downs syndrome btw), i just wanted to know that she would be realtivly healthy.

I guess, what i am blumbering about trying to say, is, that at least you know what you are facing, and even though the future is unclear, you have some idea what will happen, and you will have lots of support from here and other groups.

ah, i'm just useless at this, sorry.

dd3 *DOESNT have downs syndrome btw. d'oh what a typo

dreaming, glad to hear you're not quite so torn anymore...

I second the encouragement to ring the contact. These people usually have plenty of experience of talking to others in the same situation, sometimes it can be so comforting to find that your thoughts are 'normal' and you're not alone with all this.

I'm glad for you that your thoughts are becoming more sort-outable.
I've been thinking of you.

Have been thinking of you too Dreaming .
Since getting to "know" Thomcat and Eidsvold and Geekgrrl on here I keep a hopeful lookout for adults with DS too .
There is a gorgeous young woman with DS working locally (I'm in the City of London, not a location famed for its friendly inclusiveness) whom I often see out and about, chatting with colleagues or in the shops.
I am a great believer in the views on here that adult life for people with DS can and will be better in our society with every passing year.
And I just wanted to say to Dizzy that I cried reading your post too. I delivered a stillborn baby at 22 weeks too Dizzy and my heart goes out to you for all the additional heartache having to make such a decision must have given you. Dizzy, you can and should contact SANDS as they will have advice, kind words and possibly also be able to refer you to someone who went through what you did too XXX

hi ive been watching this thread for a couple of days and am thinking of both you and dh i never took the amnio test in my last preg i thought if anything is wrong we will cope but it is a big responsability and you should do what you think best for your family these children are special and are given to special people will keep an eye on this and hope things work out for you

Dreaming I haven?t posted here before but I have followed this thread and have been thinking of you.

Firstly I am so sorry to hear of your baby?s heart defect and of the trauma that this may cause you in what should be an exciting time for you. I hope that the experiences of others on this thread have given you some courage and reassurance that this is not the end of your world.

I would like to share my own experience if I may, I personally have no experience of ds itself, and obviously tc, eidsvold and others on here are far better placed to tell you about ds itself, but I would like to share my experience of disability which will hopefully give you some more hope J.

I was born totally blind, apart from light and dark, I have no vision at all. In those days, blind people became telephonists, piano tuners, and in some instances physio therapists. But most ended up on the dole. Although my parents wanted me to be independent, they realistically never thought that would happen, and when my mum fell pregnant unexpectedly when I was 7, she felt that it would be unfair to potentially bring another disabled child into the world, even though no-one knew the cause of my disability. Her fear was that it could be something genetic, and because of that fear, she had a termination. Well I am 32 now, I am totally independent, I have held down several very successful jobs, none of which involved a switchboard or a piano, and I am now a sahm to a ds who will be 4 next month. Rights/opportunities for the disabled have improved tremendously over the past 10 years, whereas disabled people were previously hidden from view, they are now integrated into the community, they attend mainstream schools where possible, and most people no longer see disability as something to be scared of. I asked my mum once whether she ever regretted having that termination, it was the only time we have ever talked about it, and she said ?if I?d known then what I know now, if I?d known how things would have been for you, then I would probably not have gone ahead with it, but things were so much different then that I could never have anticipated the future?. Things are getting better all the time, and in 20 years time your baby will likely have so many more opportunities than it would today.

Only you can decide the path that you will take, if you terminate this pregnancy then everyone on here will support you, equally if you have this baby tc and others will be there for practical and emotional support.

best of luck xxx

dreaming, I think you are doing a great job thinking this through and talking/posting about it. One thing I'm not sure has been mentioned is looking into and talking with parents of children who have ds and are now adults. I see patients (for eye exams) from time to time who are brought in by their parents. So, there is quite a bit of continuing care that one needs to consider. A lot of times I am just doing an annual evaluation so that the patient can continue in a certain type of program.

It's hard to phrase what I'm trying to say. I wish you the best in whatever you decide.