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help me support friends with newborn with unexpected diagnosis of downs syndrome

12 replies

mmmmsleep · 01/06/2012 19:11

Mums net ladies. Please tell me the things you wish you'd known /been told / support you'd had when your baby with diagnosis of downs syndrome was born. It's all been rather a shock for my friends and I want to support them as best I can.
Thank you!

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proudmum74 · 01/06/2012 20:06

Hi mmmmsleep - I have a beautiful DD (2 yr) with Down's, like your friend we also had no idea until she was born, as the antenatal tests had been negative. To be honest, the best thing you can do at the moment is allow her the time to come to terms with it, whilst being there for when she needs a good cry.

I promise it will get much better, but she needs to get there in her own time. The first few weeks are the worse. It's not just the initial shock, but also the sheer amount of health checks you need to go through (heart scans, chest x-rays, endless blood tests), not to mention the very direct meeting with the consultants who tell you in great detail all the challenges your DC will have.

The only other advice is treat her & her baby like you would any other new born. The thing I found the the hardest, apart from the obvious shock of it all, was the fact that no-one congratulated us. Instead people either said how sorry they were or would come up with some ridiculously optimistic life speech.

Sending big hugs to you & your friend to get you all through the next few weeks.

BigCC · 01/06/2012 21:42

mmmmsleep, you sound like a great mate to have at such a difficult time. My DD is almost 17 months and we didn't properly know until she was born, although blood tests came back high. proudmum74 gives great tips there and I agree with her, the health checks take a lot of time and really make you feel how different a time you are having, in comparison to other new parents.

I will love forever the friends who did the usual baby support stuff, turning up with a lasagne ready to eat, buying sweet clothes for her, bringing me Spatone and other post-natal treats. Also those who just got on and asked baby questions, i.e. how much does she sleep and eat etc, so that I could chat about DD as a normal baby rather than explaining everything Down's to them. The most baffling comments for me were about whether 'they' could live independently (i.e. some people with Down's) - DD was a tiny baby and the last thing I wanted to talk about, quite reasonably, was whether she would ever live away from me.

I was given great advice not to waste the first precious days worrying about later life, as its pointless and you'll miss great things. Then also to get one of those crinkly foil survival blankets you get after running a marathon, and let DD lie on it as the sparkles and shines and crackles will really fascinate her, even if she can't move very much. It is such a cheap present but DD lay on it for hours and truly loved it. Good luck, you are a great friend to have.

2old2beamum · 01/06/2012 21:56

Where do I begin 32 years ago I delivered a baby with Downs his parents felt unable to cope and we were honoured to be able to adopt him. Move forward we now have 3 with Downs and 2 more. My Downs are now 32,27, and 23 and they blow me away with their kindness and humanity. As Proudmum74 has said bring them up no differently to any other child. ENJOY

mmmmsleep · 01/06/2012 23:46

Thank you for your quick & helpful responses!I'm awaiting starters orders for when they're ready for visitors. So torn between wanting to go over to give hugs and just waiting until they say they are ready for visitors. Don't want them to feel I'm avoiding them. have already bought pretty new baby outfit and mummy treats to try to focus on having a new gorgeous baby. They are amazing parents and I know they will get there-just want to do anything I can to help with this stage in their lives.

Any other tips gratefully accepted!

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Ponders · 01/06/2012 23:53

\link{http://www.tasgreetings.com/holland.html\welcome to Holland} is a useful link for an unexpected arrival

I can recommend searching on here for old posts by Thomcat & eidsvold, who both had first daughters with Downs & have since posted some wonderful helpful things

you sound like a great friend, mmmmsleep Smile

mmmmsleep · 02/06/2012 00:14

Ponders, husband and I have tears in our eyes after reading welcome to Holland. Beautiful! Thank you for posting x

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troutpout · 02/06/2012 06:48

Err just a word of caution. That poem is not always very popular with mums of sn kids. I would have been upset to receive it. It's a bit like marmite I suppose... You either love it or hate it.
You sound like a lovely thoughtful friend mmmsleep ... Your friend is lucky to have you. I'm sure you will get it just right Smile. Some great advice on here about celebrating the arriving of a new baby... Just like you would any other baby.

mmmmsleep · 02/06/2012 08:02

Thanks trout pout. I held off texting link as might just be too soon yet anyway. Knowing them I think they'd like it but will take it slow. Baby still in special care unit so they have all that to get through and taking each day as it comes. So much for them to deal with and process all at once

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mmmmsleep · 03/06/2012 10:01

Anyone know of any good books/websites/ resources? Not of course to pile on them all at once but just to have on standby.I'm sure it'll be a steep learning curve (as it is with any baby but there might be extra things they will need to know). Thanks for all replies so far.

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Practicallyperfectnot · 03/06/2012 11:25

I'm tempted to write "SLOW DOWN". I'm sure the parents can find out this info themselves in time and will probably be given some by the many professionals now in their life. It's early days and I speculate they would just like you to be a friend and do usual baby stuff whilst also listening to their experiences over a lovely cup of coffee and cake. A homemade chocolate cake with strawberries and cream/icing (cream may go off in this warm weather) could be much appreciated - good old comfort food, and homemade makes it more heartfelt. Also something to give the many visitors which you would have with any newborn. Just be there for them eg say they can contact you anytime - that's always nice to know. And also the phone call or text to say do they want to meet for a coffee etc that morning. All of this has helped me with our family's disability but it's not Downs though.

proudmum74 · 03/06/2012 13:45

Hi, I agree with practicallyperfectnot. Your friend will get all the literature she needs from the hospital (they give you an A4 folder from the Down Syndrome society when they confirm the diagnosis)

The best way you can help your friend right now is to bring some normality into her life. I'm still eternally grateful for those friends who came round in the early weeks with cake & just talked to me about 'normal' baby stuff whilst admiring my beautiful DD.

If you are looking for info on how you can help, the the Down syndrome society have produced this leaflet for friends & family of new parents of babies with Down's.

HTH x

mmmmsleep · 03/06/2012 17:30

Thanks guys. Don't worry wasn't going to head round with A-4 folder...they're very much in shock and not ready for lots of info. I just know that after ds I was too shattered to look anything up or know what support was available to help deal with his issues and almost wanted a pa to help give me bitesized chunks of realife useful stuff rather than read all the billions of leaflets myself.
Agree most important thing is just being available and doing usual new baby things

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