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In shock - baby born with Down's syndrome completely unexpectedly - please help

141 replies

mountaingoat · 31/10/2007 23:42

Three weeks ago I gave birth to a beautiful baby girl, my second child. For 3 hours we were elated. Then we were told that she had some facial abnormalities which would need to be looked at further. From the delivery suite we were taken back to the post natal ward and put in a private room, at which point alarm bells started ringing. Shortly after that, a crowd of doctors came into the room and told us that our daughter has Down's syndrome. At that point it felt as though the sky had fallen in. I am 33; we have one beautiful, bright, perfect son (aged 3), and it had never entered our heads (very arrogantly I now realise) that we might have a child who was anything other than perfect too. We had the nuchal translucency scan at 12 weeks and were given a 1 in 5600 risk. We had (wrongly) treated that result as a no risk result, and hadn't thought again about DS. I cried for two days, and I have never felt such pain and sadness in my life. I am ashamed to say that I knew nothing about Down's Syndrome other than that it was a disability. I am now slowly coming to terms with the situation. It is made easier by the fact that our daughter is a delightful, cute, darling baby, who I love just as much as my DS. We have also had tremendous support from the NHS (which, I am also ashamed to say, I have never had a good word for in the past)I would love to hear from anyone else who this happened to - I have read lots from people who knew that their baby had Down's before he/she was born, or where people knew they were at high risk. We were low risk and had no idea at all and I think coping with the shock has probably been the hardest thing. Also, whilst people keep saying very positive things about Down's I feel so so sad and I don't know how to cope with that. Please help.

OP posts:
Tortington · 31/10/2007 23:45

just bumping fo you - i know you willget great support here. but its a bit late - keep posting - even if you dont get a lot of answers at first.xxxx best of luck

BecauseImWorthIt · 31/10/2007 23:48

Just wanted to let you know I'd read this. I have no personal experience, but can empathise that you must be incredibly shocked by this experience.

Your daughter sounds absolutely beautiful, and I'm glad that the NHS are giving you such good help right from the very beginning.

ShinyHappyRocketsGoingBANG · 31/10/2007 23:49

MG (hugs) and congratulations on your new DD

You will get plenty of support here I promise. There are quite a number of parents with children who have Downs on here, Thomcat is one of them. She has a beautiful DD called Lottie (plus other beautiful children!)

Keeping coming back.. this thread will grow and grow!

thewatlingsofeastwick · 31/10/2007 23:49

Am so moved by his but have no experience and want others to see it so BUMP

spookthief · 31/10/2007 23:50

Congratulations on your baby girl!

Thomcat's eldest daughter has Down Syndrome and I don't think they had a pre-natal diagnosis. I'm sure she, and others, will be on at some point, but I hope she won't mind me linking to this post (as TeeCee) where she talks about Lottie.

thelittleElf · 31/10/2007 23:51

I really don't know what to say to you. I don't want to say the wrong thing either. All i will say, is she is still your precious daughter, and you will love her regardless of anything. Stay strong, and hopefully there will be others on here who can give you some really good support xx

Marina · 31/10/2007 23:51

Congratulations on the birth of your dd mountaingoat
Did anyone at the hospital put you in touch with The Down's Syndrome Association - I know they do a lot to support and advise families where there is a child with DS.
We have Eidsvold and Dingle and Thomcat on here, all of whom have a dd with DS.
They may not be posting at this late hour, though, so we need to keep you "bumped".
Other parents with children with different SN will hopefully be able to chat to you about your sadness and shock after your dd's diagnosis - totally normal I'd have thought.

thelittleElf · 31/10/2007 23:52

is there anyway this can be pinned until the morning, so it doesn't slip away?

Neverenoughpumpkins · 31/10/2007 23:54

mountaingoat , firstly , congratulations on your beautiful baby daughter-she will bring you much joy.
I know you will be in shock and grieving the baby you thought you were having.
I don't have personal experience of this but I'm sure you will get plenty of support here, and in RL.
I'm sure that someone has given you details for the DS association?

MarsLady · 31/10/2007 23:54

I'll send a text to Thomcat so that she knows to look for it!

expatinscotland · 31/10/2007 23:54

there are some MNers here who did not know their children had Down's Syndrome before birth, either.

you are not alone.

bumping!

MarsLady · 31/10/2007 23:55

Sorry meant to write more before pressing post!

Congratulations

thelittleElf · 01/11/2007 00:07

bump

Saturn74 · 01/11/2007 00:21

Congratulations on your new DD, mountaingoat.
You will get lots of support from MN.

BananaPudding · 01/11/2007 00:23

My mum didn't know until hours after the birth that my little sister had Down's. My sister is now 24, and mum works in the special needs community. She's been tremendous help to new and shocked parents, I know she'd never mi d if you emailed her out of the blue. Her email is rouxlette @ gmail . com minus spaces of course. Her name is Sandra, if you ever felt like you needed an ear to talk to. I wish I had more advice, but my Perspective is only of a sister. I can say that ultimately we are better people for having Mona in our family.

1dilemma · 01/11/2007 00:46

Congratulations on the birth of your lovely dd. I have put out a late night shout for Eidsvold for you in the living overseas bit she's often there, if not I'm sure some of the others will be around tomorrow. I can only speak from a very loosley similar experience illness rather than Downs) and 'tis normal to feel sad but it will pass and your dd will bring you much joy.

slim22 · 01/11/2007 00:47

Sending you and your precious little girl lots of hugs. bump

fortyplus · 01/11/2007 00:52

Congratulations! I can understand why you feel shocked, but you will love your dd just as much as your ds.

I read an article recently about the first Downs student to gain a degree, so things may be much better than you first fear.

WitchTwoOh · 01/11/2007 00:55

aw she sounds lovely, what a sweetheart. i know that you'll get wonderful support on here, TC and Eidsvold's posts are very straight-up and honest also utterly heart-warming and awe-inspiring. welcome to MN.

minorityrules · 01/11/2007 02:07

Big congratulations on the birth of your beautiful daughter

I discovered my last child had cerebral palsy when she was a couple of weeks old

It is shock but your daughter is a child that just happens to have an extra chromosome. She will reach HER full potential, she love and be loved and WILL bring you much happiness. It may take her longer to reach milestones but the ones she reaches will be 100% more precious

I get alot of support from www.specialkidsintheuk.org. They have information on the website and the forum has some wonderful, knowledgable parents, parents of many special needs that all have the same fears and worries and will understand how you are feeling. You don't have to post if you don't want to, can just read, if you do post, they will help (like here)

Grieve if you need to, be happy if you need to, this sadness and shock will pass and then you will just get on with fighting for and adoring your daughter

And once again Congratulations x

berolina · 01/11/2007 02:29

Congratulations on the birth of your dd

You've come to the right place. As well as Thomcat and Eidsvold, geekgirl and others have a child with DS and will be more than happy to share their experiences with their lovely children. My dear friend, and godmother to my 6-week-old ds2, has a ds with Down's which was also unexpected - he also had a serious digestive disorder needing surgery. He is lovely, just simply strikingly adorable - I was just looking at photos the other day and was thinking even when he was very little and in hospital after his surgery how utterly captivating he was even them. One of ds2's middle names is for him

hazygirl · 01/11/2007 05:52

congratulations on the birth of your little girl, i know you will get support here ,i did ,enjoy her,you will get help the nhs are wonderful people when you need helpxx

Budabeastie · 01/11/2007 07:04

Many congratulations on the birth of your beautiful baby girl.

As others have said you need Thomcat and Eidsvold and Geekgirl. They all have beautiful and wonderful DDs who happen to have that extra chromasome.

Having read posts by all of them on the subject I don't think I would be worried to have a DS child and I would have been before.

Santasmissyontheside · 01/11/2007 07:14

Congratulations. Just keeping bumped for you.

mm22bys · 01/11/2007 07:20

Congratulations on the birth of your dd, I have no knowledge of Downs but I am sure you will get great support here.

What you are feeling is completely normal, and I know what you mean about thinking something like this won't happen to "me", especially given the birth of a completely "normal", happy, healthy first or earlier child.

You are in my thoughts, and I hope you are able to access the help and support you will need. Since we have found out about DS2s problems, the worst bit has been all the waiting, and lack of actual help that will enable him to progress. We have a program now, so are able to work with him, and we feel so much "happier" now that we have a plan of action.

All the best,