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SN children

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Original poster

Baby possibly has DS

22 replies

Squiglettsmummy2bx · 30/05/2014 21:34

My baby boy was born by elcs yesterday. He is totally gorgeous & I love him to bits. Yesterday I thought his eyes looked different & the more I looked today the more I feel he has Down syndrome. My screening came back as 1 in 250 so I wasn't expecting this at all but then I wouldn't have had an abortion had I known so I guess that's irrelevant. I saw midwife looking at the palm of his hands so asked her & she agreed with me that his eye shape, button nose & wiggly tongue have made her consider it too however he is feeding well, has good muscle tone & no other signs she can see. She asked a dr to come & have a look it they were busy so someone will check him over tomorrow. Babies dad is abusive so doesn't even know I'm in hospital & my mum is with my 3 older children so I'm alone & scared. The learning disability aspects of ds do not bother me but I'm so scared of the health implications & how I would juggle 4 kids alone if 1 of them is really poorly. Just looking for hands to hold while I get through tonight I guess x

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Littlefish · 30/05/2014 21:37

Congratulations on the birth of your gorgeous baby boy. Have you chosen a name for him yet? It's great news that he's feeding well.

I'll be here for an hour or so and I know there will be others along soon.

nahidontthinkso · 30/05/2014 21:46

I don't know a great deal about DS but regardless of whether or not he has it he's still your beautiful baby. I don't think that every child with DS has health problems, although i know some get heart problems.
The fact that he is feeding well is a good sign!
I'll keep my fingers crossed for you tomorrow.

MooMummyMoo · 30/05/2014 21:48

I am going to say the most ridiculous thing in the world now...but please try not to worry. I know it's ridiculous as I would be the same as you but for now, just try as much as you can not to worry too much. Wait until you know one way or the other.

I remember waiting diagnosis with my DD when she was newborn and in hospital. And it's hard. And it's horrible. And so not what you imagined or planned. But the uncertainty and feeling of protection I felt to my DD all helped me get through.

Have lots of cuddles with your precious new one, he will give you the strength to get through. And you will you know, whatever the results, you will get through.

Keep going x

Original poster

Squiglettsmummy2bx · 30/05/2014 22:48

Thank you all. I had a little sleep but midwife just woke me up for my last IV antibiotic. Can't wait to get home tomorrow as I have never left my 2 year old before & I miss him so much.
My new baby is Zøren, he is so cute & amazing & I love him to bits he is sleeping like a little angel while every other baby screams the place down, bet that doesn't last long so I'm trying to make the most of it x

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nonicknameseemsavailable · 30/05/2014 23:53

I am only here briefly BUT they thought my sister had DS when she was born and it turned out she just happened to look like she had the features and characteristics and didn't. that was many years ago now.

I am sure he is beautiful and a real gift, please try not to worry, they should be able to tell you more tomorrow, he is feeding and breathing (and sleeping - as you say - make the most of that whilst it lasts) and he is here with you, the best person to look after him whatever his future holds. When we were worrying DD2 might have brain damage when she was tiny the only thing I could say to myself was that you never know what the future holds, you can't plan for everything, you can't assume anything, you can just live in the moment. x

Original poster

Squiglettsmummy2bx · 31/05/2014 00:56

Thank you no nicknames, life is unpredictable & I plan to love & cherish my little squish whatever the future may be

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nonicknameseemsavailable · 31/05/2014 20:28

hope today has gone ok for you x

Original poster

Squiglettsmummy2bx · 01/06/2014 00:58

Finally home from hospital. Zøren has ds but it seems slight & hopefully his bowel & heart seem unaffected. Back to hospital on Monday as an out patient for some tests. Full of many mixed emotions but for now mainly so relieved to be home x

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MedusaIsHavingaBadHairday · 01/06/2014 01:05

Congrats on your gorgeous baby boy.
Don't worry about the future,just enjoy him. He may take you on a slightly different path to the one you imagined.. but that's ok.
LDs are nothing to be afraid of in the scheme of things (my son has lds and autism) and at the risk of sounding trite... he will bring great joy :D

PolterGoose · 01/06/2014 08:34

This reply has been deleted

Message withdrawn at poster's request.

hazeyjane · 01/06/2014 08:54

Congratulations on your new little boy

My little boy has a genetic condition similar to Downs Syndrome, he is nearly 4 and although there are ups and downs, he amazes us every day.

There is loads of support and friendships on the sn boards, good luck with the tests. X

nonicknameseemsavailable · 01/06/2014 10:35

good you are back home - thanks for updating us. That is good it looks like he will not suffer some of the possible health problems linked with DS.

MrsBDarling · 01/06/2014 12:12

Congratulations on the birth of your little boy, hugs xx

Original poster

Squiglettsmummy2bx · 01/06/2014 13:21

Thank you all

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Littlefish · 01/06/2014 15:09

Good luck on Monday. I hope you are given positive news on the rest of his tests. Great news about his heart and bowels.

WipsGlitter · 01/06/2014 15:17

Hi, Congratulations on your new baby. Fab name!! I have a little boy with DS also diagnosed when he was born. He has no heart or health problems. He's four now and at mainstream nursery.

Fire away with the questions!

I'm also on a Facebook group friends of downs and get stacks of good advice there!

Perspective21 · 02/06/2014 18:05

Congratulations on the birth of your little boy xx

I'm going to recommend you check out Downs Syndrome Association website as a first port of call. Take all the time you need to get used to the idea. I have a little boy, 4.5 who has DS, I'll post a pic for you.

PM if you think of any specific questions. Also check out Downs Side Up which is a fantastic blog/site/FB written by a mother of a girl with DS. Remember, you've just got a beautiful little baby...not everything will be a big deal....

Take care

devientenigma · 02/06/2014 18:27

Hi and congratulations, another son here diagnosed with Down syndrome after birth. However he has a serious heart condition and other disabilities. He's now 13 yo.

Original poster

Squiglettsmummy2bx · 02/06/2014 22:40

Thank you everyone. Just a quick update as my mum has gone home now & I'm back in charge, single mummy of 4, breast feeding the youngest 2, me time has just gone out the window :-)
Bloods taken today, Zøren was so brave. Had his bcg also & didn't even flinch. Dr I saw was lovely, she will call me with results & arrange heart scan. His heart still sounded fine but I was told the signs of heart failure just in case which was scary but let's hope I will never need to use that knowledge.
Zøren is gorgeous & has already cottoned on to the fact that if he cries I pick him up & so has spent a lot of today tied to my chest, lol. He also likes my singing voice, well I guess someone has to
All 4 kids have been asleep since 9 so I've just taken my meds (had csection so pain relief etc) & off to sleep but will read up tomorrow. I'm in North London by the way, if anyone fancies a meet in a few weeks when I'm back on my feet properly.
Thank you all for taking the time to respond, I felt very alone initially & now I don't & I'm very grateful for that x

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pannetone · 02/06/2014 23:04

Just to say I am in awe of you Squigletts - your love and positivity for your family shines out. I have no personal experience of DS (as you may not have had til very recently) but from your posts it is plainly apparent that you are going to be the best mum for your gorgeous newborn - he is as lucky to have you, as you are to have him!

Weegiemum · 02/06/2014 23:15

Squiglette, congratulations on Zoren's birth, I hope you and his older siblings are loving having him home?

One of my best friend's daughter has ds (with an unimaginably tiny risk) and she's awesome - she isn't "special" or anything, just one more kid in a pilewhen we meet up! And at 8 achieving well in ms school.

Hug your babies when you get the chance, and be grateful when they're sleeping (my oldest is 14, Middle is 12 and youngest is 10, and I'm still glad when they're all sleeping at once!!!)

Perspective21 · 03/06/2014 11:31

Squigletts you sound like you're doing well. You're a brave woman!! If you check out Downs Syndrome Association nationally, you'll find a regional group. There will be one in your part of London. I'm in Manchester and here, we will always email or phone new parents if they want, if they don't feel up to a group yet. Someone would most probably volunteer to pop and see you. In my experience, parents of others with DS are one of the best resources.

If anyone in your family is offering to buy you bits and bobs, check out Amazon reviews for books on parenting a child with DS, you don't actually need any, but some make a good read. Whatever you do, don't Google general stuff, there's too much, too many medical terms, some of which will never apply to you! DSA have loads of free leaflets too.

If you have any questions PM me....for now just love and feed your beautiful baby xx

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