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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Just had amnio result - would welcome some support

152 replies

dreamingoflamu · 02/10/2006 13:38

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

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Are your children’s vaccines up to date?
ThomBat · 03/10/2006 21:03

Here's a picture of Lottie

ThomBat · 03/10/2006 21:05

And another

ThomBat · 03/10/2006 21:07

Shall I stop yet, oh go on here's another!

ThomBat · 03/10/2006 21:09

Lottie

ThomBat · 03/10/2006 21:13

Last one, this was her \linkwww.mumsnet.com/Talk?topicid=1700&threadid=187552#3861774\ boyfriend} who also has Down's syndrome.

ThomBat · 03/10/2006 21:14

Sorry here you are

dreamingoflamu · 03/10/2006 21:25

dizzy, thanks for your bravery in writing your post. I had the same thoughts as Flustered and hope that you have had some counselling support - if you haven't then maybe look into it? Your pain is no less singnificant because it happened in the past. xx

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dreamingoflamu · 03/10/2006 21:28

thombat, the pictures are beautiful and thank you for your explinations, they really really help.

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hulababy · 03/10/2006 21:35

You ladies all have such beautiful girls; lovely of you to share some pictures. And your stories are all so inspiring - they just dispel so many of the preconcieved ides people may have of children with Downs.

DOF - thinking of you at this time. You are doing the right think in finding out as much information as you can beforehand. MN will support you with whatever decision you make, as I am sure it will be what is right for you and your family. I am glad you can ask these questions and get answers from people in the know.

geekgrrl · 03/10/2006 21:55

ok, here's a bit about dd2 - warts and all.
When dd2 was a newborn she was really unwell and went into heart failure v. early. Initially her cardiologist had hoped to delay surgery until she was 6 months old but she wasn't doing well and not even regaining her birthweight, so the repair was done at 7 weeks.
The complications she suffered were mainly due to her being so little still - it was all internal damage that affected her lungs in different ways. She had to be ventilated for 2 weeks (normally it's only 2 days) and eventually came home on oxygen, which she was on at home for about a month.
That was all a really, really hard time for all of us. It just felt like a living nightmare really, there's no glossing over it. Our older dd spent a lot of time at her grandparents, and dh and I took turns staying over at the hospital. It did affect us all, no doubt about that, but we did have a particularly bad time of it - most other babies were in and out within 10 days, and we'd practically moved in.

Anyway, she got better, we all regained our composure (although I had flashbacks for a long time). Dd2 was a very healthy baby and I breastfed her until she weaned herself at 15 months.

Unfortunately her health took a bit of a nosedive after that and she has had lots of problems with chest infections, once she had croup and bronchiolitis at the same time (she had to be greedy!) and had to be admitted to hospital for a week. Other than that, she's kept out of there really and we've kept good control of chest infections with antibiotics. This year has been much better than before and she's had only a couple of chest infections.

She does have a hearing impairment (due to her tiny ear canals & eustachian tubes) for which she wears a state-of-the-art hearing aid, which pretty much puts her hearing at the normal level. When she was a baby/young toddler she also had blocked tear ducts and it took a few minor surgeries to sort that out properly.

In terms of therapy, when dd was little she had something called Portage, where a home teacher came to our house once a week for an hour and did some structured developmental play with her (and me). She did have physio initially but I stopped very early on because the physiotherapist was a complete cow. Instead I did ordinary baby swimming with her and TumbleTots. She really excelled at baby swimming (it was the type where they do underwater swimming) and was nicknamed 'fish'. It was nice to do normal activities with her and felt more appropriate. The only special needs activity I carried on with was horse riding (v. popular!). She saw the speech therapist once a month.
Now she's at school she has speech therapy there and the school also gets support from an occupational therapist, to help dd's fine motor skills.
She is a real little sunshine. My eldest dd is a very caring, kind and considerate child, and I am sure having a sister with special needs has shaped her in this way. She often says that she wants dd2 to live with her and things like that, and wants to sit at her table during lunchtime at school etc.
Ds is only 2.75, and him and dd2 are best friends (and worst enemies at times it seems!) - they always play together and get up to all sorts of terrible mischief. Ds talks about her all the time and can't wait to pick her up from school.

She started crawling at 18 months, walked at 2.5 yrs and potty trained herself within a week when she'd just turned 4. Like most children with DS she is tiny, so never actually looked odd still being a bit of a baby, IYSWIM.

She has just started year 1 at our village school and is very happy there. she's got a 1-to-1 teaching assistant (an absolute gem and now one of my best friends) but usually just mucks in with everybody else.

Phew! I think that was my longest post ever. Anything else you want to know, just ask. If you like I can also CAT you my phone number, I'd be happy to chat (but understand if you don't feel up to it).

geekgrrl · 03/10/2006 21:57

here's another picture of her

geekgrrl · 03/10/2006 22:03

oh, and regarding travelling, we've not changed anything. In fact, as soon as she was off the oxygen when she a baby we went camping in France for 3 weeks.

dreamingoflamu · 03/10/2006 22:15

wow, thanks for all the time and effort putting that into words. I really appreciate it and it has really helped us think. Thanks too for the offers of getting in touch (Thombat too) I will of course let you know - and would not hesitate if we need to - but for now this is just great.

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eidsvold · 03/10/2006 22:28

day to day - no different really. We have outpatient appts for eyes, ears and paed - usually every 6 months and generally in a batch - so they are all around the same time. She has annual cardiac check ups.

When she was tiny - very little infections and colds. More now she is out and about and in kindergarten. Once her surgery was sorted and she came off her medication a month or so later- no real extra care in terms of day to day care - feed, cuddle, play, change her nappy, sleep.

We took dd1 to Aus from the Uk when she was 8 months old and just before she turned two we moved to Australia(my home). We have been away for various holidays.

I spent three weeks in London with her when she was having her cardiac surgery - was able to get a room in the hospital. That was difficult - as dh had some time off but not the whole time. It was easier for us as dd1 was our first. Other parents who had other children seemed to just tag team and take it in turns to be with their children. I found it hard being away from dh and felt a little alone sometimes - but he would come up every couple of days for the night when he could.

As to therapy - whilst in the Uk we had monthly therapy sessions - OT and physio.

Here in Aus we started with fornightly visits to Physio, ot and speech therapist - usually on the same day. Now we are focusing on her speech more than anything - just exploded.

She attends a sn kindergarten two mornings a week and a mainstream kindergarten two days a week, has swimming lessons ( essential for an aussie kid) She loves going to kindy - both of them.

When she was 1 I went back to work for almost a year -prior to us moving out here. She was in a mainstream nursery where she was univerally adored - I don't know who cried more when she left - the nursery workers or me!! They were fabulous.

You know to be honest - I think dd2 was harder work than dd1 was when she was a baby.

teen01 · 04/10/2006 00:42

Hi there like many others had to TRY and contribute something reassuring. A close friend of mine has a younger brother who has downs and can i just say after attending his 18th birthday party a few months ago and hearing him boast his knowledge of dolphin species and how he wants to travel the world and witness all these himself, i realised that this was a young man with a future ahead of him that will almost undoubtly be as rich and colourful than most and that will be down 2 nobodys determination but his own. I wish u and your family well in what ever decision u make. XXXXXX

ThomBat · 04/10/2006 10:23

Edisvold - agrre totally - DD2 is a great and easy baby really but still much harder to look after than DD1. DD1 was ridiculously easy - she went from 11pm through to the morning when she was 8 days old for example. She so rarely cried, that when she did D and I would look at each other and say 'what's that noise?'!! I felt unworthy of all the help and support both from my wonderful friends and famoly but from the NHS.
The NHS may be crap in many ways but I found their service amazing when it cam e to care and support for Lottie.

How's your head today Dreaming, how you doing, and how's your husband, how's he feeling?

shangrila · 04/10/2006 11:15

Hi Dreaming

My thoughts are right there with you and your family at one of the toughest of times. I was in those exact same shoes just over a year ago and found the whole experience overwhelming.

But you are doing something really important - talking to others. I felt buttoned up and on my own, with a very limited circle who I could talk things through with. We made our choice. A hard one, but turns out it was the right one for us. But I still feel the burden of silence and am hoping that, whatever your outcome, you will continue to speak to the lovely, knowledgeable women here.

dreamingoflamu · 04/10/2006 14:30

I'm still here, doing okay today - feel a bit detached from it all actually but that could be just being so emotionally tired from all I'm taking in and hinking about. My dp is doing okay but has found it harder in the last couple of days since we had the downs confirmed, I think thats when it became real for him.

Thought I would add some details on me as i found it useful to be able to relate to the women's circumstances when I read through other threads on mn last week.

I'm 31, had a nuchal test and bloods at13/14 weeks all came back fine, I was given a 1/970 chance of going on to have a downs baby. So no indication of this until the 20 week scan a week ago. Had bleeding at 12 weeks and discharge on and off and felt awful until 17 weeks or so. So I was just regaining my confidence when this all happened.

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dreamingoflamu · 04/10/2006 19:32

it all just hit me again the last hour or so. Feeling pretty miserable. Can't go on in this limbo for much longer.

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ThomBat · 04/10/2006 19:41

Oh sweet, made me so to read your last post.
If there is anything I can do just say.
Would have checked in on you earlier but have been out at meetings in town all day.

dreamingoflamu · 04/10/2006 19:44

thanks, I think I just need to focus again on the decision. We've been absorbing alot of information the last few days and my head is a bit all over the place. I'm going to go and scribble on some bits of paper in a bit.

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dreamingoflamu · 04/10/2006 19:50

also clicked on a thread for amnio and their results were all clear, wonderful for them, but it just made me feel a bit low. The what if, if only. And if i even catch sight of the ante-natal club thread I wonder if I will ever have a worry free pregnancy again and feel all nostalgic for chatting about names and buggies and aches and pains. Hence I think its best to move away from the computer and focus on bits of paper!

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ThomBat · 04/10/2006 19:51

I feel a bit all over the place for you. Mad how much you're filling my nead and I have no idea who you are!

Do you think in your heart you know what you want or are you really so all over the place you can't think?

Anything I can do?

geekgrrl · 04/10/2006 19:52

dreaming, sorry you're having such a tough time. It must be so much to take in, and so frightening.
I hope you manage to find some peace.

Greengirlforever · 04/10/2006 19:53

Dreaming - I saw your post on the "high risk" thread, and I have been lurking on this thread as well. My thoughts are with you - I was, for some reason, so sure I was going to end up in the same situation, even though we thought we had already made our minds up about what we would have done. Reading all the posts on here, particularly of course Eidsvold and Thomcat I was beginning to doubt my decision and had sort of begun to adopt a "wait and see" approach, although in my case I would have had a lot of opposition from DH had I wanted to keep the baby.

So I guess I just want to add my support to all of these other people. Know that whatever decision you come to will be the right one for you. [hugs]

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