baby has just been diagnosed with DS

[proudmum74]

Hi

We've recently learnt that our beautiful new baby has down syndrome (a shock given the tests in pregnancy indicated a very low risk). Whilst I love her to pieces and can cope with the day to day aspects of her care, I am really struggling to cope with the reality that she has down's and get very emotional / guilty whenever I think about her future. Our families have been great, but I have noticed that some of our friends seem embarrased / unable to cope with this development.

I guess I'm looking for advice from other mothers who have been in a similar position on how they have come to terms with it & what can I do to ensure my daughter has the best possible chance for the future?

Thanks

hello

Congratulations on the birth of your baby. I have no personal experience, but I didn't want your post to go unanswered. There are several posters on mn who have children of various ages with DS, so I am sure someone will be along shortly who will be able to give you some advice/support.

how old is she? please give yourself time and how much proffessional support have you had?

I can't really offer you any help but just wanted to say that by posting this you are showing what a wonderful mother you will be to your beautiful daughter.

A good friend of mine has a son with DS and their bond is impenetrable. Infact it made me realise how much I wanted children of my own.

There will be plenty of support on here for you.

Hi, my son has DS. We just took him to a camping shop and he tried every tent and has set up his new sleeping bag in his room in his sister's play tent. He is 5. As with any new baby, give yourself time, and everybody else. If you are able to then maybe talk to them about how you are feeling generally and that will give them a role and take away any worry they may have about acting inappropriately. Having a new baby is tiring, don't feel bad about feeling worried. My son is at school and is learning to read and write. Have you contacted the Down Syndrome Assoc. or Down syndrome International? They have loads of info. There may be a local group near to you for families with children with DS. Just enjoy the baby stuff for now. Good luck! Bet she is cute.

Hi, I found out my son was downs after they found his heart condition. I was also low risk with downs on my maternity notes. I have also lost a baby with a heart condition among other issues. It took me a good 8 month to come to terms with the situation, however I was also proactive in going to the library, reading books, finding groups etc.
At the beginning I didn't want to see my friends and got my mam to phone around to tell everyone of the birth. It is hard but it will pass.
I also think you should treat the baby as any other. Don't get hung up on people's personal stories as you don't know how the road will turn until you are travelling along.
At this moment the only tip that I can give is, when the tongue sticks out, tap the end, this automatically makes the tongue go back in the mouth. I also said tongue away, now thats all I need say. He's 9 now btw. Anything else feel free to ask or pm me if you want.
Finally, CONGRATULATIONS

Hi, I think my situtation is kind of similar. My son is 7 weeks old and after a mostly trouble free pregnancy was born small, floppy and not feeding. After a very stressful 2 weeks in special care and then further tests and waiting we found out he has a rare genetic syndrome. I am still riding on the rollercoaster of emotions. So up and down, bursting into tears, having to tell each person that hasn't heard, worrying about the future.....then suddenly feeling that I can do this and I will (because I have no choice!).
Please feel free to contact me if you want to moan, rant, etc. From what others say with time it will become easier. Take care

my own son is not DS but he has severe learning disability ,severe epilepsy,NEAD, no speech is doubly incontinent,and slight cerabral palsy, and is 36 now.

but i work in special education with the school leavers, i have done this aspect of the job for 13 years and during that time have had a lot of youngsters with DS among them, infact a number of them have been my success story, one young man in particular done portering at a local hospital as his work experience, he done it so well he was offered a job for when he left school instead of college..
i had reason to visit the hospital 6 months after he left and he was now a theatre porter doing taking patients back up to the wards, BUT also has the responsibility of changing the oxygen and gas bottles when required.6 years on and he is still there and doing a grand job and is liked by both staff and patients alike.

hope that this gives you some positive vibes for the future.

myra

Congratulations on the birth of your baby! Very good posts on here by and i just wanted to add that the DS association can give you some information and maybe put you in touch with another family in your area when you are ready for that. We have a DD with DS (same as you nothing showed in prenatal tests so complete shock) and having another family (who we didn't know - it was a friend of a friend) to travel through it all with has been brilliant. DD is 10 now, mainstream school, Guides, music, horseriding, she is behind her peers but completely accepted and supported by them and we are very confident about her future.

There is loads of help available from people on here when you need info or support, for now just enjoy your baby.

Meant to add, Hellenbach there is charity called Unique which helps families with children with rare chromosomal conditions which can give you more information and maybe put you in touch with other families too. There is a very active group in W London if you happen to be near here?

Congratulations, on the birth of your dd.
Finding out that all isn't as you expected is a shock & a rollercoaster of emotions all of which you are allowed to feel IYKWIM
There are lots of posters on here with children with DS & i'm sure with give you lots of support & advice.
Enjoy your new baby, show here off proudly & true friends will share your pride x

More congratulations from me. Your post has given me flashbacks to 18 months ago when I had my 3rd son who after a pregancy which was deemed as v low risk was born with DS.

the future is a scary thing - not least because you don't know what it holds - but then again nor does anyone else. I have learnt that worrying about the future made it very difficult to enjoy and get to know my new son - and a lot of that was tied up in being in shock at the way my life changed so dramatically overnight. Or so I thought - the reality was and still is that I had a baby just like any other baby.

18 months on, my son is just like his brothers - bad to the bone . When he does something new / achieves something, it is however just that bit sweeter and exciting.

Whereabouts in the country are you? there is lots of support out there and we can get you to it.

Your emotions are so strong right now, but they will change with time. One thing I wish I had had more access to at the time is the space to talk through what I was feeling. My gp at the time referred me for counselling - where I was told my needs were too great to be dealt with on the NHS . if you feel counselling would give you the time and space to sort out how you feel then do go to your GP and ask for the support (am sure you will get a better response!).

My biggest issue at the moment is having to go back to online shopping as it takes too long to go round a supermarket with my little prince because of all the people that get sucked into him being cute!!!(15 of the muppets at the last shop)

Hi, my baby (now 15 weeks!!) was also diagnosed postnatally. It was a massive shock and there were (and still are) lots of tears. I dreaded telling people and if I just bump into someone now sometimes I don't even mention it (it is very hard to tell he has DS - HV and GPs have not noticed until I told them )

I try not to think too much about the future and am just concentrating on the day to day and getting to know him as a baby.

We saw the community paed when he was about 6 weeks and the physio when he was about 11 weeks and have another appointment with her soon. I contacted the DS Association (burst into tears on the phone) and have been to one parents meeting but am not sure if its my kinda thing, think it might be more useful when he is a bit older.

It's interesting he was ill a few weeks ago (nothing serious) and it made him seem like all babies (which he is) and I stopped thinking so much about the DS and more about him as a baby IYSWIM

For me, while I am still very, very sad sometimes I am now more optimistic about things, don't feel his DS is omnipresent and am totally in love with him.

HTH

Sorry, also if you search for DS on mumsnet you might find when I posted a similar message.

Someone responded to say that all children are special and beautiful, but our children are like rubies among the diamonds!

Congratulations proudmum74!

I have a beautiful little boy with DS who is 21 months now.
DS was diagnosed during pregnancy so I had a few months to come to terms with things before he was born but it still took time and I can only echo what others have said, take time to grieve and get to know your baby take each day as it comes and enjoy her.

It's great to hear you have support from family and as far as friends go I found others tend to follow your lead so be proud and positive about your beautiful DD.

There is lots of support out there. The DSA be able to put you in touch with a local group and when she is a little older your pediatrician or health visitor will put you in touch with services that will help with her development and future needs.

For me the future means giving my DS the same love, care, experiences and opportunities as I would for any of my children. Life has gone on as normal it can be tough sometimes but as parents it's amazing how we can adapt find inner strength when it comes to our children.
Good luck and if you want to get in touch let me know.

Hello Sinclair was going to post about my lovely niece but I see you already have.

Just to echo other posts here, and celebrate your baby's birth. About one baby a day is born with DS in the UK so, wow, how special is she!? Congratulations!

hi proudmum, congratulation on the birth of your dd!
My dd with DS is 9 now, the years have flown by...
When she was born I was completely shocked really. Nothing had shown up in the scans - not even the massive hole in the heart she turned out to have. It all felt like a nightmare at first and I cried and cried (and cried some more).
It's all those worries about the future that you would never really think about with an ordinary baby, but with a child with SN the full force of it hits you right away.
I couldn't face meeting parents of older children with DS, nor did I want to see parents of ordinary babies and be pitied. It was a big grieving process really that lasted a good long time, like grief does...

Is there Portage in your area? Dd started Portage at 5 months old, and it was so helpful for me and her.

I also really threw myself into physio etc., although once dd was a bit older and I'd got over the intitial sadness, she'd recovered from her heart surgery and so on, I decided to take her to mainstream activites instead. She started aquababes at 8 months old and was actually one of the best swimmers in her group - it was amazing to see her swim so well under water, when she was still a bit of a pudding on land . Later she also did tumbletots, which was great for her on so many levels.

Myself, I eventually got to know more and more parents of other babies with SN. My closest friend (who I met by chance in a supermarket) has a ds with DS born on the same day as dd. Those friendships have been absolutely invaluable for me - having people who understand, have been there, are dealing with the same issues as you, is just so important and really helpful in moving on.

(shall stop here before I write an essay ) - one last thing though - if you like, please join the Down's syndrome UK email list. We have lots of new parents on there at the moment. Here are the instructions:
UK Downs syndrome e-mail list

For informal support, discussion and information via e-mail -- this is a list for UK topics and people and those interested in them.

To subscribe and unsubscribe to the DS-UK discussion list go to:

listserv.down-syndrome.net/archives/ds-uk.html

Or send an e-mail to:

[email protected]

with the phrase subscribe DS-UK in the body of the message.

Many congrats on your lovely little one, Proudmum74!

None of us can know what the future will hold for any of our children, but it certainly doesn't have to be a bad one. Recent publicity about one situation where someone with Down's Syndrome has qualified to be a teacher. Exceptional, but possible with some people. Whatever your lovely baby's abilities or challenges ahead, they are much loved, much valued, and to be much respected as people in their own right.
Shall hope and pray that the future is filled with joy for you all.

Hi All - thank you all so much for your support, it has really helped!!

We do have great NHS / health visitor support and we are due to start portage in a few weeks time.

She is now nearly 3 weeks old. I guess yesterday was just a bad day, I blame the lack of sleep! but on the whole it is getting easier with each day. I'm also forcing myself to meet up with the other NCT ladies so dd has lots of new future friends

Thanks again

Hi proudmum,
My DD is different, but wanted to say congratulations on the birth of your little one!

Congratulations on the birth of your little girl. My ds is now two and was diagnosed with Down's syndrome shortly after he was born. I can remember how overwhelmed I felt and like you had many fears and anxieties about his future. For me the first few weeks were the hardest emotionally, but as time went on the sad days were less and less.

Two years on I have an amazing little boy who although has his delays is like many two year olds.......funny, cheeky and full of mischief He goes to mainstream nursery and has lots of support with his development from portage and other therapists.

I've found my local Down's syndrome group to be fantastic support.....talking to other parents who have been through similar experiences and who know exactly what you are thinking and feeling has been invaluable!

Morning,

Oh how refreshing to see so many mums on here with children with DS :0) Sometimes I feel like I'm the only one

My gorgeous 21 month old has DS and I am totally smitten by him - as is his big sister, wider family and the staff at nursery!

There are days I feel really frustrated about things, but to be honest there are days I feel like that with my 3 year old 'normal' DD!!

The future is different now and I agree with Riven - disabled children are a real friend filter!! It draws you closer to the ones who are true friends and thankfully, you make fantastic new ones along the way.

Keep posting on here with questions/ good tips and so on as it really does help to get other people's suggestions and support.

I know it can be really hard turning up to support groups as I can actually find seeing children slightly older than my son a bit daunting, but being able to pick people's brains about what support you should be receiving, help with filling in DLA forms, etc. is really useful.

By the way - the best thing I did was buy a rear-facing buggy as I hated feeling as if people were looking at him (even though I'm not actually sure they were!!) and giving me sympathetic glances (paranoid, perhaps?!). I now push him around having a good ol' natter to him feeling like a really proud mummy. It's great for all baby's communication, but has particularly helped me to feel that he is fully engaged with me and it kind of helps me feel a bit protected.

Anyway, have a good day All...
x

Congratulations on the birth of your baby Proudmum.

My DS3, who's DS was diagnosed after birth, is now 6 years old. I think I am different to most in that after the initial shock, which lasted about half an hour, and mainly constituted selfish thoughts of how I was going to return to work etc (in all honesty, I hadn't wanted the pregnancy from the start and had considered termination when I found I was expecting) I was fine with it all.

DS1 summed it all up pretty well when he said 'so what, everyone's different anyway! Such wisdom in a then 8 year old!

I can honestly say I am more maternal now than I have ever been and DS3 has brought out qualities in me that I never knew existed. I have come to realise that my son's happiness means more to me than anything else, and from the start I have been adamant about accepting his 'condition' and that he is not 'normal' in the way society sees 'normal' and there is no point in pretending he is. He is just my little boy, as individual and important as my other two boys. His learning is pretty delayed, but he doesn't care, and that's the most important thing.

Reading your post took me back to when my ds1 was diagnosis shortly after birth 6 years ago. All of the shock and sheer disbelief.
All of these positive posts are so true and I promise you that one day you will be the one lending the shoulder.
When we heard the diagnosis I was literally on the floor and it took all of my wonderful family and friends to keep me going.
Like you some of my friends found it difficult to know how to react (in fact one friend has never contacted me since). But the ones that I needed were fabulous.
Ds1 is in year 1 of mainsteam school, he is delayed in some aspects yes but every achievement has been wonderful.
He is writing his name and starting numerals when I can persuade him to come in from playing football, climbing trees and generally reeking havoc with his brother.
I still do have difficult moments and I'm sure that some of the posters do too, but he is the one who makes me feel better and his attitude to life is one we all could learn from.
As many have advised I feel the best thing you can do is enjoy your lovely baby and celebrate as you do so. You will look back in the future on this time with the 'sharpness' taken off and be glad you did.
Also it won't be long before she is running you ragged and driving you mad with the cheeky attitude!!!