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.

Hi Hungrymama,

I'm so glad everything was okay and you got to see tiddler wriggling around I'm also very jealous that you're getting two more scans! I really want another one but we've got loads of building work going on at the moment and we're skint so dh has vetoed the idea of paying for a 4D scan - spoilsport!

I think your philosophy is a very good one too - I just wish I could follow it! I am a natural born worrier I think and just hate the unknown and things I have no control over. In fact, I was speaking to my dh the other night and we were musing over the fact that I've always wanted to adopt kids with SN, so why on earth am I worrying about the outcome of this pregnancy? I think it's basically because I can handle most things so long as I know what I'm dealing with.

How old is your DD btw? Mine has just turned 3 so we've not got into the last minute costume making yet. Not looking forward to that as I am no domestic goddess. V impressed that you made a carrot costume at all, let alone overnight!

Incidentally, just realised today that there are only about 13 weeks left till christmas!! We shall be huuuuuuuge by then!

Best go pick DD up from nursery. Let me know how you are getting on.

Also Buzzybee if you're out there, just wondering how you're getting on too?

K xx

KatyH - hello there! I'm sure you could get those scans too if you asked - let them know that you want to monitor growth as you've been given 'high risk' - you shouldn't have to pay for those. Mention to your midwife next time she's having a prod!

I know exactly what you mean about just wanting to know. The unknown drives me mental!!! Then again, I thought about things in terms of DD (4 3/4 now - birthday a few days after Christmas so I shall be huge AND stressed beyond belief!!!) - if someone said, 'your DD might be going to have something really wrong with her in about 6 months time. You can find out for definite if we do a test that has a 1 in 100 chance of killing her' there is no way on earth I'd do the test just to satisfy my curiosity. Not if it was 1 in 1000 or 1 in 10,000. Sure it'd be easier if we all knew but in truth when do we ever know what's round the corner? Oooh, I'm philosophical today aren't I?!

My brother got married this weekend - we sure didn't see that one coming a year ago!!!! It was fab to do something totally about someone else. We've been so busy time has flown by, which is a good thing I think.

I know that, just as you were with your DD1, you're going to be the absolute best mummy possible to that wriggly little baby you're brewing inside. You wouldn't have chosen for her to suffer with eczema, but she did and thus you did and somehow you got through the worst of those times together. It'll be the same with this next one. Whatever gets thrown at you both you'll cling on tight and get through somehow. Even when things are going brilliantly I still feel like I'm just clinging on and doing my best. It can hurt to love someone so much and I can't imagine how there'll be room in my heart to love another the same way, but when I feel those miraculous little kicks I can't help but warm to whoever it is in there that keeps delivering them.

I think the hardest thing about not knowing is not really feeling you can 100% let go and not worry. If you really let yourself embrace the 'it WILL be okay' positive vibe think how gutting it will be if it's not. It's a self-preservation thing, don't you think? Part of me has to hold on to the possibility that things might not be perfect perfect so I'm not too disappointed if they're not. Does that make sense? Quite possibly not given the terrifyingly fast depletion of my brain cells of late. I struggle to finish even the most basic sentence and names of people and places constantly elude me ! At least when I'm typing I can pause and think without anyone noticing!

Hope you have a great week and that the ups vastly outnumber the downs.

Lots of love
xx

KatyH - sorry I haven't posted on here for ages. How are you going?

hi

not sure if anyone is still around but wanted to say i was in tears reading some of your stories both about your worries and also about your children.

I had posted asking for info on having an amnio or not - wish i had seen this before i did it.
On monday we were told we had a 1:60 risk of ourbaby having ds - but this has gone down to 1:90 with a scan the next day. At the time of the phone think my hubby - who took the call was been pressurised into us having an amnio the next day after the scan but we decided against it.
Have to say our consultant was great when we said we'd have our next scan 2wks tomorrow - i'll be 19+3, as the scan pictures werent the best on tuesday - but he was okay with the soft markers being 'normal' ( hate that word at the best of times).
He was also very reassuring that if we decide to have an amnio that we can have it carried out at any stage of this pregnancy.

sorry rambling on about myself, but you have expressed the things i've been thinking about, how will we cope, will we love this baby when he/she arrives etc.
the hardest thing i've found so far has been the reaction of family - comments like omg, what are you going to do etc etc. my answer to that is that we are having our baby in april and will get on with it like any other first time parents - sheer tiredness, joy and wondering if we are good parents.

anyhow - sorry for the long post, just wanted to say thank-you all for sharing your experiences/thoughts/feelings

Hello Hungrymama, Positive and others,

Sorry, I haven't been on MN for ages but I just wanted to let you know that baby Tess was born on the 21st January after a lovely 7 hour uncomplicated labour. She doesn't have DS but to be honest we couldn't have cared less if we were in Holland, Italy or Timbuctoo! We are officially smitten.

Can I also thank everyone for their support and for sharing their experiences. I don't know how I would have got through the remaining 20 weeks without you.

Hope you're doing well Hungry...not long now!

Congratulations KatyH and welcome baby Tess..

I've just found and read this thread. My dd2 has ds and is adored by everyone. When she was born she was very ill and we nearly lost her when she was just 4 months old. The first 2 years of her life were very stressful as she was so unwell.She is now 8, goes to the local mainstream school with dd1 and ds and has a wonderful and full life. When she was born we were very shocked but watching her fight for her life has changed our outlook on life.You find out who your real friends are and realise the most important thing in life is your health and making the most of your life.Thanks to my dd we have wonderful friends and a great life.
To see photos of our dd
click here Great books by the way!

congrats KatyH and welcome Tess.

ahh i remember your original post - congratulations!! Lovely news xx