Advice needed from parents of kids with Down's Syndrome

[KatyH]

I'm due dc2 in Jan 2008. I had a termination at the beginning of the year for anencephaly so was keen this time round to know if there were any neural tube defects. Anyway, had the [stupid feckin] AFP test to check for spina bifida and it came back high risk for down's...! Hadn't paid much attention to the fact it tested for that which was stupid as I didn't really want to know. My risk is 1 in 129 which I know logically is pretty low and we have refused the amnio because we would never terminate a baby with DS (it was bad enough doing it for a condition incompatible with life). However, by nature I am a bit of a control freak and feel that I would like to prepare myself for the possibility that I am the 1 in 129.

Basically, I would like your advice on what to expect if I do have a baby with DS. How is it different from having a baby without DS (if it is at all)? In my head I imagine many of the difficulties probably come later in life with schooling and trying to enable them to live as independent a life as possible...but I'm probably being very ignorant now! I've just been a little worried by people's comments on our 'bravery' and being 'able to cope' and it got me wondering...is it really that difficult? What would be the main thing(s) you would advise another parent to prepare themselves for?

We did have the detailed scan which showed no other markers of DS, so at least I could be fairly confident that if the baby does have DS it should be generally physically healthy (assuming all else goes well).

Sorry, this is rather long-winded All words of wisdom gratefully received

P.S. Sorry, I'm posting this as I'm about to go to bed (very rude of me - but I rarely get a chance to go on MN before 11pm!) so will most likely check in again tomorrow.

Oh man - WAY too many emotions linked to this whole thing! My dd just started back at school so I have this whole day to fill trying not to think about it - and because I'm preggo most of the things I have to do revolve around babies in one way or another - sorting out the room, checking out buggies, etc etc - all the 'normal' stuff you do when you're excited and feeling tip top hippity hop about the whole thing. Now I just keep bursting into tears and then telling myself to get a grip. I have the radio on to keep myself distracted and I'm busy finding as many things as possible to do so I don't have to stop for even a second even to THINK ....

I did find everyone's comments so helpful and i have to immerse myself in that sort of thing, but the flip side is so overwhelming. Suddenly I don't even really want to think about being pregnant - like I'm rejecting the poor thing before it's even arrived. But what I hope I'm rejecting is my fears and my concerns.

I spent hours last night praying and crying and trying to think about something else and talking to the baby ..... thank heaven's my husbands away at the moment, at least I have the bed to myself!!!

What an outpouring this is - sorry - but sometimes it just feels like I might explode with it all and it's only been 24 hours!!!!

The scan date was the best they could do. Funny how two weeks can suddenly seem like forever. But part of me doesn't want to know in case they say - oh yes, all the signs are there, lets up you to a 1 in 10 chance instead, because then I REALLY have to face my fears!!!!!!!

So long as you keep posting here I'll keep posting back.

Sometimes even the thinnest thread to cling to can help to keep you sane

I actually think it is illegal for a nursery to refuse to take a child with DS, I'm sure a more knowlegeable mum will be here in a minute.

My ds does not have DS, although he has many charachteristics that some children with Ds have. Several parents at the SN group I go to who have children with DS presumed that's what he had! Also I have to admit I used to wish that's what he had too (I hope no one is offended by this). My best pal had DS when I was growing up she is a very special person.

The help (in my area) available inc SALT groups, feeding clinics, Physio etc, give the well needed support to parents of and children with.

I love the Lottie Tales too, made my eyes well up about the sausages.

My severely autistic son went to a mainstream nursery with 1:1 support funded by the LEA. It was excellent with SN. No nursery can refuse your child for reasons of SN, but some are better than others in reality. There are SN nurseries available as well, and it's just a case of seeing which you think will suit the best.

Hi Hungrymama,

I do know how you feel but it's only been 24 hours, give yourself a bit of time to get your head round things. For what it's worth I was much the same a fortnight ago and felt totally overwhelmed and scared, yet today I am utterly chilled and at ease that what will be will be (much of this is to do with the lovely MNers who responded to this thread).Have you managed to talk to your dh? If not, do you have someone else to talk it over with?

Also, try not to place too much emphasis on the scan. We had no markers but were told that most babies with DS will not have any markers...so be prepared for the scan to change absolutely nothing at all! Mind you in saying that what I did find was that the scan just reinforced to me that I didn't actually care if the baby had DS. I think this was because you get to watch them for ages while they check all the bits. I'd never had a scan at that stage before and I was completely fascinated. At one point the baby did a bit of a somersault and all you could see was its little bum and my heart just melted I felt incredibly protective towards the baby afterwards.

My biggest stress now seems to be other people! My lovely (well meaning) mum keeps phoning me up and asking me in her most solemn tone "so how are you?"...sigh. She told me the other day that she had told my gran about the scan and what they were looking for and she "couldn't answer, she was so upset". I know in some ways it's natural as you don't exactly wish for a (grand)child with special needs, but I just find it particularly insensitive as I've made my decision and been very clear about that, so it would be nice if they stopped acting like it would be the worst possible tragedy. My worst fear now is that if the baby does have DS, I'll have them all trooping in to the hospital, weeping and wailing! I can't bear the thought of being pitied, I just want them to love my baby no matter what.

I'm now at a bit of a loss as to how I get other people to come to terms with the possibility. I did have one plan though but I'm not 100% sure about it. Basically I was going to get a 4D scan, just so I can 'aid bonding' with the baby (I know it's a bit 'Jordan and Peter' but I really do feel like the poor poppet has been dehumanised). However, I thought today that maybe if the rest of the family seen the pics too then they might stop acting like the world may come to an end if the baby does have DS. Does that sound like a stupid idea? My dh thought it may run the risk of people scrutinising the pics to see if they can tell if the baby has DS...but I doubt you would be able to tell would you?

Sorry for rambling on. I really hope you're feeling a bit more relaxed about things. I'm here if you need to chat

Also thanks to gess and alycat for the info (assuming you've read all the way through my ramble!).

Much better today - not a single tear or even a suppressed one

You must have found it just a little bit encouraging that no markers were found - I mean it's better than a very definite 'oh yes, the signs are all there'

I've told my mum too and I know that she's a bit concerned, but also a bit hopeful so so far that's good. Only she and a friend know as I can't cope with people asking the 'so, how ARE you?' loaded question as it sets me off! I completely understand the anti-pity thing - its just the LAST thing you want. But I'm sure the relatives will rally once the baby is there - its that whole bonding thing - no matter what it's your blood, family ....

I think the 4D scan is only Jordan and Peter if you get it televised and post it on the web . I would do whatever you would find most helpful. The others have to deal with their own issues, they're not your problem.

I'm having to re-align my thoughts too. Since this baby is coming come what may I still have to love it and bond with it and value it for who it is. I know that if my DD had been born with any kind of problem or sickness or 'defect' I would have loved her just as much if not more. It wouldn't be what I'd choose for her but I wouldn't love her any less. Just because this little critter has had some warnings flagged up doesn't mean it's less of a person in there, does it.

I don't know that I'll ever come to the point where I don't care whether s/he has DS or not, because in my heart of hearts my preference would be for not, but nevertheless I'm going to work on bonding with and loving and caring for my unknown bub. I'm sure as you do this with yours (you're obviously a few steps ahead of me !!) that will come across to every one else and they'll respond accordingly.

Well, that's the theory anyway!

Sorry for never being on line late. I'm a woman who needs her sleep even when not preggo. Now anything after 8.30 counts as 'staying up late'!

ps on the nursery front - I wouldn't want my SN child in a place where they weren't wanted even if legally they should be allowed. I'm sure you'd be able to find places that welcomed such children through SN/DS networks - maybe try a local search with the mumsnet local thing. At least time is on our side with these things - we've got a while to get 'info-ed up'!!!

Ok, not sure if I should be writing this, but I am going to anyways.

I am not Graciefer, I am her DH.

It is 6am and I have just got home from hospital where Grace has just given birth to our beautiful second son.

Who it turns out has Downs Syndrome. This came to a complete shock to us (we had no testing) and to be honest left me shell shocked. We knew there was a good chance our new son could have ASD like his older brother and we had come to terms with this, we never gave second thoughts to anything else.

The last 7 hours have been the scariest of my life, my son was born at 11.33pm and 1.5 hours later Grace's placenta had still not moved and she had lost a huge amount of blood and her blood pressure plumpted. They rushed her to surgery where she stayed for 1 and a half hours, whilst I sat holding our new baby, wondering how we would survive without his mother.

Thankfully the surgery went without hitch and Grace is fine (given the events), suddenly my worry about her sunk into worries about my son, what sort of life is he going to have, how will we cope, will he have any associated medical conditions?

And I come home and the pc happens to be open on mumsnet and this post jumps out at me. I really can't tell you how much reading your thoughts and experiences have helped me, my last words to Grace was 'welcome to Holland again, I am sure we will enjoy our stay', but inside I was questioning this. I now feel so much stronger and have so much more clarity of thoughts and for that I thank every single one of you.

Grace will be in hospital for a while yet as there are a few complications and several tests they wish to do on our new son, but I am sure she will be back here very soon with a whole new set of questions.

Again thanks for all the help your words have given me, I certainly can see why my wife loves this site.

KatyH I haven't read this whole thread but your feelings so exactly match my own that I felt I needed to post.
I was given a 1:21 risk at age 37 from the nuchal fold scan and at the 19.5 week scan they said there were 2 other possible soft markets. I also had the blood test but not combined with the nuchal. This came back at 1:660. I had no other tests because I didn't want to.
The 19.5 week scan was very important to me as I wanted to understand whether I could also be facing a number of other problems commonly associated with DS like heart defects and I felt much relief that this wasn't the case.
Like you (I think) I feel I've come to terms with and in fact would be overjoyed to give birth to a healthy baby who happens to have DS - but I so so hope that if this does turn out to be the case my friends and relations will feel the same way rather than pitying me.
My mother is rather like yours and was pressuring me quite a lot to have the amnio (the "what then" was left unspoken). My grandma died 10 years ago but I could exactly imagine the scenario you talked about.
I'm 25 weeks now and feel I've already bonded quite strongly with the baby which we have named Beatrice Amy.

Graciefer and DH - CONGRATULATIONS!! So glad to hear Graciefer's recovering well now. This site is hugely supportive although you'll find some very strong emotions expressed around the topic of special needs.

Graciefer & DH - congratulations on the birth of your baby boy

I am happy for you to email me offlist if you wish [email protected] (my dd Tanzie is 2.5yrs old and has DS)

Sharon x

graciefer's dh-

I was just wondering about Grace earlier today and whether she'd had the baby. Sorry the birth was such a scary time, and I hope they're looking after grace in hospital (I found them very good when I had ds3 there). Congratulations on the birth of another baby boy - boys are great - (and to ds1 on becoming a big brother) and I look forward to meeting you all properly soon- I know we've been in the same room before but didn't recognise each other- our ds1's are at the same school. Wishing Grace a fast recovery.

Much love to you all.

Cxxx

Gracifers DH - did you read the link that Thomcat gave - it's a truely amazing article and I think you'd find it very encouraging to read. I know I did. I'm sorry that your son's entry into the world has been such a traumatic one - birth is a wild enough ride when it all goes 'smoothly'!!!

Here's hoping you are all able to get some much needed rest and that you get LOADS of support in the days, weeks and months to come.

There are certainly some amazing folk on mumsnet who will almost certainly be able to reassure you that they have walked this path before you and done so much more than just survive

I think you have to give yourself the freedom to feel whatever you feel - you can't help your gut reactions - but as you immerse yourself in positive, encouraging support from others it enables you to work through what you're feeling and relax into a much happier place.

Lots of love and congratulations to you all
xxx

Congratulations, on the birth of your little boy, I hope you are all back home together very soon.
Best wishes Max

Thanks for all the well wishes, they are much appreciated and I have passed them all on to Grace.

Hungrymama: I did read that link and found it touching and inspiring. I know I have a beautiful family and loving family and that is all that matters.

Just a little update, Grace is having a blood transfusion today as she has collapased a few times as her blood pressure is low and she has very low haemogolbin. Doctors have assured us that she will feel 100% better after that.

DS2 is doing ok, his blood is very thick (25 haemogolbin level) so they have put a tube down his nose into his stomach now so he will take more milk, they are hoping this will help with the thickness of his blood, or else they are going to take some blood out and replace it with fluid to 'dilute' it.

Also waiting on the blood test to check for his pilates (sp?) levels, something to do with red spots on his skin. I'm not really sure what that is about as there is so much to take in.

Heart scan on Monday to check for cardiac problems and then all we have to do is wait for physiotherapy to show us what we have to do with his feet, as they are clubbed/turnt in. They have told us that as you can turn them where they are supposed to be, it is probably due to the way he sat in the womb and that we will be able to stretch his tight tendons over time.

I can't wait for mum and baby to be home, we miss them dearly, but I am lucky that my mother has been looking after DS1 a couple times a day, to allow me to go to the hospital.

Again, thanks for all the well wishes and support.

congratulations to you and Grace. Sorry to hear that Grace has been so poorly. Hope that both Grace and DS are well enough to leave hospital soon.

Hope all the tests go well.

Ds2 had 'positional talipes', we were shown how to rub them as well, as he grew they turned out as well. It was quite relaxing- I still sit and rub his feet now he's 5

If there's anything practical I can do to help (pick up some shopping etc) just let me know.

Hope Grace is feeling better after the blood transfusion.

Mnay thanks for the offer Gess, but I almost have everything in control, DS1 is making sure I keep the routines going.

Also thanks for the proper term for the issues with his feet, this has allowed me to google it and learn a bit more.

I have just got back from hospital, the transfusion is well under way and everyone is fine.

I wondered if someone could tell me the policy of mumsnet and pictures, I have a couple links of some pics I have taken, but wasn't sure if it was allowed or encouraged to do so here.

Thanks again for all the congratulations and well wishes.

Congratulations Grace and Grace's dh!

You'll need to set up a profile for Grace to add pictures. I can't remember how you do it but someone will be along soon who can explain, I hope.

It's weird with 2nd children isn't it - you kind of get pulled in all directions. How's ds1 dealing with Grace not being there?

ooh yes please do put some piccies up. You need to go to 'my registration' to add them to a profile. It might be easier to put them on photobox and post a link- you can easily make the album private again in the future if you want.

Mr Gracifer - Congratulations to you and Grace on the birth of your son

Hope she's feeling better soon and you're all back home together. Hope the scan on Monday gives the all clear.

It's funny you ask that, I only commented today how much like a cat DS1 is, as long as he is fed and watered, he doesn't really mind who is looking after him.

He doesn't seem phased at all that it is daddy who is feeding, dressing, showering and putting him to bed and he has been really good for my mother, which is a Godsend in itself as we have had weeks of bad behaviour with the die off from the enzymes we started him on.

I am sure deep down though, he is looking forward to mummy and brother coming home as much as I am.

I haven't got many pics, but here are a couple of our new DS2 (its really hard to get used to saying all this DS stuff, lol).

img250.imageshack.us/img250/4985/1001253zu5.jpg
img252.imageshack.us/img252/ 2005/1001255hq3.jpg

Oh wow Look at that hair.

(dh would kill for that)

He's fab.

2nd pic - dodgy link

He's utterly, utterly gorgeous. I look forward to meeting him at a coffee morning (I used to take ds3 when he was little). Now dh has had the snip I'm safe to cuddle babies and get broody again

oh I'm glad ds1 is happy enough. Our ds1 was a bit shocked when we brought ds2 home, but he soon settled down. He loved ds3 from the first time we brought him back (and ds1 and ds3 have the same age gap more or less as your ds1 and ds2).

yum yum, what a scrumptious baby
he looks absolutely gorgeous, grace & mr grace - Congratulations!!!

My dd2 has DS - (she also had a heart defect which is now fully repaired, so if tomorrow's scan isn't so good let us know and I will give you some more info) - I remember the initial shock of it all rather well. It didn't take too long for us to realise that it is a small part of her, not her defining characteristic if you see what I mean.

Oh Mr Graceiefer, how lovely your little boy is!
I want to send you best wishes on his arrival. Have a look at my profile, at my lovely DD3, who will be 7 next month. Believe me when I tell you she makes me laugh like no one else! I hope Grace is recovering and you are all back home together soon. Keep posting (with more pictures!) xx

Oh, what an unbelievably, unreasonably gorgeous baby.

Many, many congratulations