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.

You need Gracifer. Her second (very, very gorgeous, I've had a cuddle) son was born with DS very recently. She didn't know before birth. Most people don't (the only person I know who had a good idea was eidsvold).

Of course you'll be in shock for a while but I can promise you that very quickly the disability won't matter as such. Of course it makes life a little more complicated (or more 'interesting' as a friend said to me recently), but very quickly your dd will be just your dd, and the DS won't be important to you iyswim.

Do contact the DSA if you haven't already- it's always helpful to be in contact with people in the same situation. I've just started working with someone with a grown up son with DS, I'll ask her when I next see her (next week) if there's anything she can suggest, although I suspect things have changed since she went through it all.

Oh and although I'm sure you don't want to be here. Wlcome to the SN board.

No experience I'm afraid, but congratulations on the birth of your daughter.

Congratulations mountaingoat

Hi, I don't have any experience of this myself, but just wanted to add both my congratulations and support. I imagine that you must be so full of a wide mixture of emotions!

I have a friend with an (adult) Downs syndrome sister. I know that she has required a lot of help and support over the years, but she is the most delightful person. She's like a ray of sunshine, and without wishing to stereotype or offend, I believe that lots of Downs children have this sunny quality. She's certainly enriched the life of her family.

Wishing you all the best over the coming weeks and months.

Everyone is so helpful here, but i would really emphasise your need to grieve for that 'normal' child you never had. It really takes a long time to get over that. All the firm visions you had for your child as to their future has to be revised. Let yourself do that. There's so many support groups too. My dd was born with issues and I rely on her support group incredibly, even though I've not met any of them in the flesh!

take care

I've re-read your message, and wanted to add to microwave's message (which I agree with). Support groups were a lifeline for me in the early years, both RL and online. I found online easier to cope with first of all. I think a real value of support groups can be that you see families living with the disability as a normality, not as something terrible and mysterious that happens to other people. That really helped me to accept that my son's condition was going to be part of our life, and that we weren't the only ones in that situation. There are also people there who are a)interested in what you have to say about your dd and b) don't shuffle their feet, look embaraased, and quickly change the subject.

Do take time to work through the sadness, but do also bear in mind that it won't always be raw, and it won't always be something that is the first thing you think about when you see your dd. Do know that those feelings will go away. I remember collapsing on the floor very over dramatically when my ds1 was dxed, then sobbing for days. Now, although I can remember doing it, it's so distant I struggle to remember how it felt, and to remember how raw and painful it was, now our son's condition is just normality. You'll reach that stage as well, but don't feel bad if you have to shed a lot of tears to get there.

Firstly, congratulations on the birth of your daughter. Secondly, you will feel very strange and up and down for some time. My daughter was born with severe brain damage and the first few months were a mix of anxiety over her future, grieving for the 'perfect' baby and normal life I should of had plus absolute love for her. The shock will wear off I promise. The sadness will fade although it will always be there right at the back and surface when you see non-disabled babies and toddlers or other mums moan about something trivial (in yourmind). You will feel defensive, proud, all sorts of things. I'm now 3 years along and despite dd's severe Cerebral palsy to me she is perfect and much of the grief and sadness have gone. Wonderful to hear you have support and help. The Down's society could teach Scope a thing or too! But do come onto MN and rant/grieve/celebrate. It really does help to talk and there will be someone who has been there.

hi, I don't have any advice as such, but everyone here is very positive and supportive. I just followed that link to thomcat, and thoughtit was wonderful the love and bond she has with her dd. never heard of her before this post.

Thats the lovely thing, on here getting to know so many stories and linking up with such a wealth of experience.

It must have been a huge shock for you, like you said, the shock is the thing. I am sure you have come to the right place. x

Helloe yo you and elcome yto your daugher , congratulations.

Hoping that by keeping this bumped Eidsvold 9who is antipodean so doesn't post normal hours) thomcat or one of the toehrs will see it.

I do know hgow it feels to have a child diagnosed with a disability after birth- although it was mch later for two of mine (one doesn't hve a diagnosis at all yet, just a condition). As NMC says the sadness will pass int he main- it is a grieving process and takes time.

Good luck to you both. Your daughter will be a blessing in ways you never realsied possible.

I have no experience of DS but just wanted to say congratulations and welcome to the SN board.

Congrats on the birth of your dd. I do not have a child with SN but know you will get wonderful support on here fom the wonderful mums who do.

I have seen this reading on here before and it seems to make perfect sense to me:

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans... the Coliseum, Michelangelo's David, the gondolas of Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!", you say. "what do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life, I've dreamed of going to Italy!"

The stewardess replies, "There's been a change in the flight plan. We've landed in Holland and it is here you must stay."

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It is just a different place. So, you must go and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would never had met. It is just a different place. It is slower-paced than Italy, less flashy than Italy, but after you have been there while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandt. But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That is what I had planned."

The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Congratulations on your new baby, mountaingoat.

There are lots of people here who can and will offer you very good advice and support.

Congratulations on the birth of your dd, mg!

Have you seen the Sears website? They had a son with ds, and have some stuff about parenting him. www.askdrsears.com/html/10/T107400.asp#T107401 I only read what was in the Baby book but I found their description of the shock of learning their ds had ds and how their feelings changed over time very moving.

Congratulations on the arrival of your dd.

15 years ago my son was born with a cleft lip and palate. I was heartbroken, and thought that life would never be what I had expected. I certainly isn't (!) but I wouldn't swap my ds for anyone or anything else. What he has experienced has made him the very special person that he is, and he is loved so much by so many people - and gives so much love in return.

I found talking to people who had been through similar experiences very helpful - made me realise that stuff can happen to anyone!

Don't rush things, take it step by step, and don't expect too much of yourself.

mountain goat, not much tiem nw due to baby son being grumpy, but I would like to say congrats on the birth of your gorgeous little girl, congrats that you are getting such good support and also sympathy that you have to change your expectations, I know how hard it is to come to terms with such a diagnosis.
I was told after our dd was born that she had major cardiac issues and Noonan Syndrome, that due to ehr lack of weight gain and poor colour her heart might already have been failing.
Twas out of nowhere and I would never want to go back to how I felt then, it was desperate for my DP and I.
5 years on things are great, it does get easier, you do learn to cope with everything they require.

You will get financial aid also via disability living allowance and carers allowance(helpful if you planning on going back to work and now can't)
my email is [email protected]

if you ever feel like spouting off there :

congratulations on the birth of your daughter.My dd is 13 and has a very rare chromosomal abnormalitie,part of chromosome 5 is missing.Ok she is very hard work but we love her so much and would never be without her.Enjoy your daughter and love to you all.

I just wanted to say congratulations on the birth of your very special little girl.

Welcome to Mumsnet.

Thomcat will try to get on today.

Just wanted to say too that I read your thread and it has moved me. I have no experience myself. I just wanted to offer my congratulations and support. Your thread has moved me and I know you will no doubt love and enjoy your DD. It is the shock that you will get over eventually.
DrNorthener, your analogy was very good.

Congratulation on the birth of little mountaingoat.
You must be completely torn. I have no experience, but hope that others will be able to lend you constructive and informed support.

congratulations to you all mountaingoat

am sure you will get practical and emotional support here

i only have the experience second hand as
this happened to mate of mine, it was completely out of the blue for her (but her nuchal scan test was low but i found this out after baby born...)
and we were pregnant together sharing everything,
so doubly shocking sad all bits of everything, really..
her baby is the most delightful happy beautiful child as i am sure your little girl is..
but this will not take away from the shock and also dealing with family reactions

thinking of you all
all best wishes for the future, too

Congratulations on your daughter

The same thing happened to my stepdad and his ex wife 28 years ago. My stepbrother was born with Down Syndrome and some other conditions. I know it was a shock for them too but I also know that there is no way they would change anything about my stepbrother. He is a great person, very much part of both families, and lives as independent a life as he possibly can. It is true what someone earlier said about each person fulfilling their potential, rather than comparing with other people. I wish you and your family well for the future.

Mountaingoat - more congratulations on the birth of your baby. And a big welcome to Mumsnet

As others have said, ThomCat had no idea that her little girl had DS, and I can tell you that everyone who 'meets' TC on MN is kept entranced with the adventures of her lovely, clever little girl - and also with the other children with DS and other conditions that we get to 'know'.

Can anyone remember the link to that article written by a male journalist father of a child with DS? I think TC posted it, actually - it is a wonderful account of parenting a child with DS, with a new perspective... will try and find it...is his name mathew something?

I do not have a child with DS - my DS has an orthopaedic condition, but like you, I have been very very impressed with the service we have had from the NHS.

yes the northern dr has good analogy
you are in a place you never planned to go
give yourself time to adjust
and just be

do you have alot of family around,good friends and support rl ?

how is she healthwise?
my friends baby had to have heart op..

congratulations, mountaingoat

I am sorry you're going through a tough time - your situation sounds very similar to where we found ourselves 6.5 years ago when dd2 was born with DS - totally, utterly unexpectedly, I was 24 and we had a dd1 of 19 months with just the standard issue set of chromosomes [hgrin].

I found it very difficult at first - 'luckily' our acceptance of it all was speeded up because dd2 needed heart surgery and was very ill - the very real prospect of losing her made me realise how much I loved her IYSWIM.

I also very much recommend finding a support group - whether online or real life, whatever suits you. Personally, I found it very difficult to see older children with DS when dd2 was tiny so stuck to online groups.

I know you're in a crappy place right now but it really does get better, honestly.
It's a bend in the road, not the end of the road, and your dd's extra chromosome is just a small part of the person she is and will become. DS is not a 'defining characteristic' - I have plenty of friends with children with DS, and our kids couldn't be more different from each other, in looks and personalities.

If you have any questions please feel free to give me a shout. I would also be happy to talk to you on the phone if you like.