Life with a baby / child with DS

[mowmi]

Hi Ladies,

I might be getting ahead of myself but I'm trying my best to get my head around having a baby with ds.

I've been given 1 in 9 chance that the baby I'm carrying has ds

Had cvs yesterday not because I would terminate this pregnancy but so I can be best prepared should this little one have the condition.

I really want this baby (so does dh - he's being more positive that the baby will be ok) but I've no experience of children with ds.

Anatomically baby looks fine - no problems picked up with heart, bowels, nasal bone - my risk is due to increased nt (3.4mm) and low PAPP-A.

Think dh is imagining one of us will need to care for the baby / child full time and that one of us will need to give up work. Financially this isn't an option for us so that's a big worry.
Will I be able to find a child minder to look after the baby when I return to work or is dh right?

I'm so confused but I can't terminate a chid at this point just because he looks a bit different and has sn's

I know I'm getting ahead of myself but I need to know what I might be getting myself into!

Any support / positive stories most welcome.

Best wishes Mowmi

Hi Mowmi,

I have a 2 year old dd who has Down Syndrome. I didn't have a nuchal scan with her so her condition was a complete surprise when she was born. Although I loved dd straight away, I knew NOTHING about Down Syndrome and to be honest I was pretty scared about what life would be like. I wish I had known then just how happy dd would make me and our entire family. She is a beautiful, fun, healthy, clever little 2 year old who I am so so grateful is my dd.

I don't work but that is just by choice, there is no reason why I couldn't. I know other people now who have kids with DS who both work full time and their child goes to normal nursery. I don't think the staff have really had to do anything different, although they did all undertake a signalong course, as it is common for kids with DS to have speech delay so signing is useful. We are just starting to have a look at pre-school's for dd now and the plan is for her to go to a mainstream pre-school and primary school. Although she will need some one to one help.

I've got to go out now, but just wanted to post something quickly as I'm sure you are eager to gather info but will try and come back later on.

Glad you found your way here mowmi.

My eldest son (now 10) doesn't have DS but he has severe learning disabilities and severe autism. I currently work full time (in flexible work- do a lot from home). Childcare is an issue for us (would be lying if I said it wasn't), but he needs very specific very high ratio care, which the vast majority of children with DS don't need.

I honestly feel honoured to have discovered the world of learning disabilities - it has changed my life for the better.

I sit opposite someone at work who has a grown up son with DS (we both work in learning disabilities so it's not that surprising iyswim). She often talks about his life and in her opinion he has a very good quality of life (semi independent, he has a job and a girlfriend).

Hi I'm a mom of two and a specialist teacher of children with sensory impairments. I had the priviledge of working with a young girl with DS last year who fitted in to none of the stereotypes of DS, extremely agile, no physical problems, had a small lisp and was about 18 months 2 years behind her peers in class, so accessing an alternative curriculuum in a mainstream primary. I don't feel qualified to advise you other than keep smiling, and bear in mind that 12 years ago I was told my dd had a 1 in 2 chance of having downs, due to thigh bone measurement, and somethng " shadowy" on her neck, and something with her feet and kidneys( tubes too small/short)this was in a small rural hosp, with a non english speaking doctor. luckyme...well I ignored all this and wouldn't have any further tests due to having 3 previous miscarraiges, and didn't feel it right to jeopardise this pregnancy. Well 11 years on and my daughter has just graduated from Primary school, no DS, and a supersmart girl she is, just mild dyspraxia...well I'm very clumsy and who cares? Hope you get the news you want x x x best wishes

Sadie

Hello again mowmi, glad the CVS went well and baby looks well
As I said in my last post I've played the awful waiting game too after my amnio so I went through a lot of emotions during this time and all sorts of questions raced through my mind so please CAT me if you need to talk, I'd be happy to help.

As far as life now DS is here all I can say is I'd have another 3 if they were as easy as him! The worst problems were with his heart and now these have been corrected life is back to normal (although with 3 instead of 2) DH and I still work, we still do the same things we did before and DS is no different than my other DC other than he takes a little longer to reach his milestones and has a few more appointments but that's it so far. I can honestly say if I knew then what I know now it would certainly have helped to put my mimd at rest.
I've no doubt we'll have tough times in the future but once your child is here You just learn to take things as they come and love your child no matter what.
keeping everything crossed for you over the next few days

Thanks ladies, your kids all sound great. You've really helped me and reassured me that I'm not being too naive in my thoughts of how it might be.

I'll keep you all posted x

Good luck mowmi. Hopefully you'll get good news in a few days. But thought it might be worth sharing a video I made about ds1 and his disability.

Saintly your video is amazing - not my idea of severe autism at all. What a fabulous life he has! Thank you for sharing it with me x

Hi Mowmi,
All I have to offer knowing that you've already made the hardest decision not to terminate is enjoy the baby/child that arrives, take everyday as it comes and enjoy every minute.
I can offer loads of advice likewise the other parents on the board. I also don't mind pm personally.
Yes my DS is downs among a list of diagnosis. I also know plenty of other families downs has flourished including my neice. Each family having a different story to tell, some good, some bad.
You don't know what level of disability your child will have until you start trekking down the road. And you are right to start seeking information now.
HTH, take care x

welcome mowie! I have a dd with DS who is now 8 so not so little anymore. She was the easiest baby and the only one of my three who actually slept well.
Her toddlerhood was a bit stressful as this was the time various minor 'structural abnormalities' were identified and rectified - for instance, her middle ears are really narrow and she now wears a special hearing aid, and her tear ducts were too narrow too and needed to be widened surgically (minor procedure but obv. still involved going into hospital etc.). She was also poorly a lot more than my other children - lots of little ones with DS have lowered immunity and are prone to catching chest infections etc. She has thankfully completely outgrown those issues and is now a very healthy and active little girl .
From a logistical point of view, she attended our local nursery when she was a baby/preschooler and is now in Y3 at our village primary school, together with her siblings. She has a 1:1 teaching assistant provided by the education authority. I don't work but that's not just due to her having DS, it's a whole bunch of factors really (live in the middle of nowhere, dh's job situation changes constantly, no family support, 3 children etc., etc.). I have friends who have children with DS and work without any problems.
Dd2 is the most gorgeous, even-tempered and kind individual. If I take a child shopping with me at the weekend, I take dd2. She is just no trouble. But of course all children, including those with DS, are different - I know children with DS who are complete monkeys!!
If your CVS is positive, there is plenty of information on the Down's Syndrome Association website, including a booklet for parents who have a prenatal diagnosis.
Wishing you all the best!

Hello mowmi - hope you get your results soon. My first child has DS and is now 12 and I work - he is a little monkey but he goes to a local childminder and to our local kids club without any trouble! It would really depend on the child. You can also visit the Down Synome Education Trust website for lots of really helpful info if the tests come back positive but whatever happens, enjoy your pregnancy! Do you have any other kids?

Ladies, thank you so much for taking the time to write.

We've just had the all clear in terms DS and other C abnormalities - we are so relieved.

Your encouragement helped me face the possibility of having a baby with DS and helped me believe that we could cope.

I'm ever so grateful to you all and your children all sound fabulous!

Mumsnet is fabulous - Women and the way we reach out and come together are truly amazing!

All the best to you all and your families x

Hi mowmi, very pleased for you.
Good luck with everything

Good luck!

What a relief for you! Hope you can just get on with enjoying your pregnancy now.

What fantastic news mowmi, you must be so relieved Now it's time to relax and enjoy the rest of your pregnancy. Good luck.

Oh good news mowmi. Pleased they were quick too.

Glad to hear your news, amazing that your results came back so quickly....blood pressure down now
Enjoy the rest of your pregnancy.....

Sadie x x x