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

[mountaingoat]

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.

Thomcat Your post made me cry.

Please don't think I am being patronising when I say I think you are amazing!

I understand a tiny, tiny bit about feeling protective as I did the minute the sonographer said they suspected Edward;s Syndrome in my youngest.

I have just logged on and have tears running down my face from reading all the lovely messages - I can't believe there are so many. Thank you all. Thomcat, thank you for taking the time to write about your experiences - your description of what happened to you in hospital sounds so familiar. Our babe didn't have a heart scan until a few days after she was born, and the gut wrenching experience of seeing my tiny baby stretched out on a table while the consultant spent what seemed like an eternity scanning her heart is one which will stay with me forever. My legs almost collapsed from under me with relief when he said her heart was essentially ok with just a tiny hole which they will monitor. It is just such a different world from the one where you have a "normal" baby and a trip to the health visitor to have them weighed once a week is about as complicated as it gets.
I also know what you mean about responding to people who ask how I am. I say I'm ok, which I am really. I have to keep functioning because I have two children to look after, and I am far from being miserable all the time. But sometimes I just want to (and do, but only in front of my husband) just scream and shout "why us?" "why has our darling child been saddled with this condition which is going to be with her, and us, for the rest of our lives?" I admit I am sometimes (though, honestly not always) green with envy, and so sad it is like a physical pain, when I see friends, or just people out in the street with their broods of perfect kids. I am a strong person, and so is DH. We will get through this, but I can't help thinking, dear God, wouldn't life have been simpler if our baby didn't have this condition.
I do have lots of supportive friends and family around me who are being wonderful but none of them has had an experience like this, and so it is massively comforting to read here about people who do really know what we are going through. I can't tell you how good it is to read how positive you all sound. I also know that already I feel so much better than I did in those first few days. Thomcat, I looked at your pictures and your Lottie really is a beautiful girl - I can see why you are so proud of her. Thanks again all of you.

I also wanted to add that at times when I'm not feeling bad, I realise that everything is relative and actually I have an awful lot to be thankful for. As one of the messages said, I do also look at my beautiful girl and feel guilty for feeling sad. Graciefer I read your story and my heart went out to you. You sound so strong and together and you have a far more complicated situation than I do.

hi mountaingoat, congratulations on the arrival of your little girl.

i have a neighbour and an aquaintance who both have ds children, one little boy is 2.5, she had him at 29 yrs old,and is comming on leaps and bounds, he uses sign language and she says she is having to improve hers as he is now asking questions.he plays with all the other children where we are and is such a toughie.

the other little boy is also a delight and just getting ready for school, mainstream, he answers all your questions in sign and is a credit to both his parents.i understand what a shock it can be but i think now a lot more is expected of children with ds and alot of support is given to them to become contributing members of society.

both sets of parents were traumatised at the birth as they had no knowledge, of course now they say they wouldnt be without them.

good luck, theres a bright future for your lo.

Hi Mountaingoat.
Just wanted to add my congratulations and send you my support.
I work in the NHS as a sppech and language therapist with people with special needs and work with lots of children and adults with DS.

A lot of these individuals live totally normal lives with jobs and boy/girl friends and all the other stuff that we all take fro granted.

Things move so fast and the world of SN is not the one that people of our age remember from their childhood with minibuses shunting people off to mysterious places.

I adore my job and sickening as it amy sound, am a better person for all the people and families I come across.

XXX

Mountaingoat
Couldn't just read this and not say something.
first - Congrats on your wonderfull and beautifull little girl.
second - I BELIEVE that God gives these children to people who CAN get through a difficult time and who can give their children so much love.
good luck.

I'm so pleased you're back and chatting

Yes it would be easier in many ways if our children didn't have DS, but then they wouldn't be them, and as your child grows and develops her own personality you'll realise how lucky you are. It will be hard sometimes, really hard, and you'll cry, but you'll also be the proudest parent at sportsday, and at the school play and so on. And all the other parents as well as being proud of their own will rejoyce with you too.

Children, people with DS have great social skills, it's certainly true of Lotbags and you'll get such a buzz from seeing her interact with others and watching others fall in love with her.It's wonderful and impossible not to feel totally blessed.

The goals they struggle to reach, that come as second nature to their peers will make you appreciate things in a whole new way.

And yes I often asked 'why me'. And then I answered my own question - why the hell not? There's nothing so very hard or terrible about being a parent to a child with DS, in fact far from it most of the time. There are so many worse things in life, why shouldn't I be one of the 600 parents this year to have a child with DS? Someone else's child was born blind, and someone else's child didn't survive, and someone else will never have the opportunity to know what it's like to be a parent, and someone's child will die of a drugs overdose, and so on. Is it really so bad to have a child with an extra chromosome? Not one missing note, an extra one!

Don't get me wrong, even now I still have moments where I feel sorry for myself a bit, but it's short lived, mainly I feel sorry for everyone else

Oh and re the envy thing, don't feel bad, it's normal. A girl I knew, who was pregnant the same time as me and we knocked round together at the time, had her DD 2 days after Lottie was born and I found it so, so hard to be around her. But you'll soon realise that your child is perfect, she just has Down's syndrome, that's all, she's still perfect. She has one more chromosome than most other people, that's all, but she is absolutely still perfect.

Personally I think there should be a lot more people with DS in this world.

Don't worry about avoiding people with 'normal' kids if it upsets you. Just take the least painful route.

Couldn't read this without saying congratulations mountaingoat on your DD - and lots of love and luck for the future.

Congratulations on the birth of your special little girl.
These posts are beautiful they have mad me cry and also very proud.
I have been reminded how wonderful love and life can be and how inspirational and strong women can be.

Congratulations on your baby girl. Sorry I don't know anything about Downs to help you but you are in the right place for support.

Take each day as it comes and enjoy your baby.

Hi Mountaingoat, Just wanted to send you my congratulations too xx
My DD3 was born just over 7 years ago, with DS, I can remember clearly the feelings you describe. These days though, my life is a world away from those early times full of worry. Worry for her, for me, for my other 2DDs. But we are all doing fine. As time goes by your little girl will show her own character and personality, and Down Syndrome will become just a part of who she is. In my experience a much smaller part than it seems in those months after birth.
Things that helped me in the early days were joining the DS association and seeing other families who were just getting on with life. It also helped me to tell absolutely everyone, I felt somehow they were looking at DD3 and thinking does she/doesn't she have DS? And as some of the others have mentioned, Portage is a wonderful service, DD3 began this at 3 months old and they were such a support to me.
So there we are. I'm 7 years further down the road than you are, and I can tell you its fine, truely. I love DD3 with all my heart, just as I do DD1 and DD2. My gals all have their own personalities, and are all flippin great! Have a look at my photos. All the best to you and yours, keep posting xx

Just to add another positive story. ds1 is starting in a few weeks at a small kindergarten (15-20 children) which 3 children with DS attend. We met one of hem when we visited and goodness, she was delightful. Interactive, captivating, determined. ds1 fell in love with her on the spot, and tbh, so did I.

I had only read the op, have just read a few other posts and want to say how proud I am to be a part of mumsnet. Hope the others advice helps you mountaingoat

Mountaingoat, congratulations on the birth of your daughter. Thomcat, you make me so proud of this place.

Thomcat, thanks for your post. My DS2 doesn't have DS, but he does have his own problems, and we are having a hard time accepting them. He too is the most amazing little boy, and your post has made me see that while the world has changed for us too, it doesn't necessarily have to be a bad place...

Has "Welcome to Holland" been mentioned at all here?

Sorry just seen that "Welcome to Holland" has been mentioned, I am reading the more recent posts first.

Sorry...

My darling DD was 6 yesterday but I can still remember so clearly the roller coaster of emotions when she was born! My son was just over 2 at the time and after an absolutley wonderful birth I looked at her as she was delivered and put onto my tummy, I knew-she looked straight up at me. Hubby didn't have a clue and I kept my concerns to myself, I suppose hoping that they would never need to be aired. A few hours later, the Paediatrician came in and confirmed their suspicions too! I felt like the bottom of my world had fallen through. I had absolutely no idea about DS.
I bonded straight away, and my love for her was unquestionable but I just didn't know what to expect or who I was loving.
The experience of life with Amelia has had it's shares of up's and down, but then life with any child does.
Amelia was slower to reach some milestones, but not by much, she is caring, confident and outgoing and although her speech is still unclear, she has a very good sign vocabulary and always gets herself understood! She is very happy and settled at mainstream school now, learning to read and write and is truely a wonderful little girl.
Looking back I can remember thinking "how will I ever manage" but you do. Love for your children cannot discriminate and I throw myself into supporting and adore both of my children for who they are.
With time "shock" will ease, sadness will come and go but determination and love will just get stronger and stronger!!

Sorry for the waffle!

Hi MountainGoat.

I just wanted to ad my message of congratulations on your dd's birth. I hope you get the support you need here.

Wishing you all the best,
Megg.

Just re-read TCs post, and how true!! While I was in hospital with Amelia, feeling really lost and sorry for myself, the woman in the ajoining room lost her baby- It just throws a completely different perspective onto things!

I can honestly say I didn't celebrate Amelia's birth for a few days. We told closest relatives but didn't want all the balloons and flowers. Then it struck me how selfish we were being. We had a beautiful, healthy baby girl to love and look after, and that is just what we are doing!

Congratulations!!

For anyone that is interested, my 6 year old "shock" can be seen here scroll down to 10th Aug!!

As you may tell, I am a very proud Mummy!

Oh Dingle what lovely posts. You are indeedy a very proud mummy.

Dingle, what gorgeous photos. We love Groombridge too
Mountaingoat, glad this thread is helping you and marvellous news that your dd's heart is in good fettle.
Mumsnet has been a great support to many of us in times of shock and emotional chaos, this thread shows what a wonderful community it can be, and now you are part of it too
TC have you named that baby yet?!

congrats on your dd.
enjoy her and i'm sure as she grows many other people will too! The young lady I know who has ds has so much love to give and she makes you smile no matter how down you feel!

congratulations on the birth of your daughter.
I can imagine how this must be a shock and hard to deal with the mix of emotions. I dont have any experience but wanted to say hello, congrats and I hope you all coping ok