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Original poster

Friends new Downs baby. Advice please

34 replies

SlightlyJaded · 29/03/2011 18:25

Hello. I am new to the SN boards and am hoping someone can advise me.

One of my best friends gave birth to a beautiful little girl a few days ago, the baby has Downs. My friend and her DH were not expecting this and are both utterly shell shocked.

The DH is being a star. I saw him this morning when he dropped his DS at school and he is being very positive about it - i.e. 'there are far worse things she could have been born with', 'we'll be fine' etc. Perhaps too positive?

But another mutual friend saw my friend yesterday for 5 minutes and said she is in complete shock and distraught.

I have looked at a few Downs websites so that I understand a little of the medical facts but what I want is advice on how to best be her friend. Me and her other friends want to celebrate her daughter's birth - card, present etc, but equally I don't want to gloss over her distress.

I am struggling to find the right words to help her. I know it's not all doom and gloom with Downs but my friend is in shock and having to realign her hopes and dreams for her I guess.

I know the little girl was being tested for heart/bowl defects and I assume the fact that they are home means this was ok? But is that right? I don't like to ask.

So I would really appreciate any advice on how to approach her with warmth and understanding but also joy - she is a beautiful little girl who has been born into a wonderful family and surely that is worth celebrating?

Thanks so much

OP posts:
BestNameEver · 29/03/2011 18:30

This reply has been deleted

Message withdrawn at poster's request.

HouseTooSmall · 29/03/2011 18:33

I think you are being a bit harsh on slightlyjaded. She wanted advice- not a ticking off. You could have got your point accross BestNameEver without the lecturing tone.

Just be her friend slightlyJaded and take your lead from her and her husband.

SauvignonBlanche · 29/03/2011 18:34

Don't do anything differently than you would have done.
Only you know how 'best to be her friend'.

HouseTooSmall · 29/03/2011 18:34

Oh and send flowers etc as BestNameEver says.

growlybear · 29/03/2011 18:35

ooooo for a friend like you.I would let her know that you are there for her. and i would ask her how the tests went.Just try and be yourself just like you were before.I have a disabled child and most of my friends ran in the opposite direction when we had the diagnosis.The true friends i have ask me how things are how tests went.They just ring up for a chat.Just be a true friend to her.

BestNameEver · 29/03/2011 18:40

This reply has been deleted

Message withdrawn at poster's request.

HouseTooSmall · 29/03/2011 18:42

Didn't mean to offend BestNameEver and I do get where you are coming from.

Original poster
SlightlyJaded · 29/03/2011 18:42

bestname sorry if I sound ignorant. I am when it comes to this.

I have bought the same present I would have bought, same card etc and have cooked a chicken caserole. I would have treated everything normally but our mutual friend told me that she have our friend a big hug and said 'lovely news on the birth of DD' and our friend pulled away crying and said 'no, it's not'.

Her DH said she is very wobbly.

So I do feel the need to tread carefully.

OP posts:
HouseTooSmall · 29/03/2011 18:45

Sounds like you are doing your best SlightlyJaded.

Original poster
SlightlyJaded · 29/03/2011 18:53

best name I do understand your point. And to a degree it is true - ignorance often leads to fear. I am not devastated or horrified just completely in the dark and want to offer support to my friend if she needs it, but also not say anything clumsy or ignorant (as I have possibly lady done here so worth posting after all)

I don't want dramatic or personal revelations about feelings but both her DH and our mutual friend have indicated that she is struggling and as i am due to see her soon I wondered if there was anything useful I could bear in mind. Her DH also said 'she could do with a chat to her friends' - so again, I get the feeling that just being jolly (which is how i would have been and how i do feel about th birth) is not necessarily tactful.

But thank you for your view point. It all helps :)

OP posts:
cansu · 29/03/2011 18:59

I don't have experience of this as my dc were diagnosed with autism around 3 years, but I would imagine your friend may need to be with someone and give reign to her grief and distress. I found I had to keep a brave face on with nearly everyone when what I really wanted to do was cry and feel sad for me and for my dd. I didn't want to upset others by being negative and upset around them. I think you should take your lead from your friend. I have learnt to be positive about my dc and their condition, but there isn't a day that goes by when I don't wish it could be different. I know that everyone doesn't feel the same before people post to tell me off though!

Impress73 · 29/03/2011 19:04

As mum to a 7 month old adorable little man who has been very poorly and also happens to have Down's Syndrome, the pitying looks are still very fresh in my mind. So lets start with the donts!
DONT:
use the term downs baby
express sympathy or say sorry
avoid the situation
mention how you saw "one" on GMTV and they'd won an award for something or other
say how affection "they" are
in fact, definately dont use "they"
and don't be hideously upbeat and positive because, trust me, she wont be there yet....
But she will get there,so
DO:
acknowledge how sad she must be
allow her to greive for the child she thinks she should have had
allow her to make speeches (I spent the first 48 hrs telling everyone how all was going to be fine despite my son being given a very slim chance of him surviving!)
face facts and do your research (the downs syndrome association are great!)
ask questions and be honest.

Just be the friend you would have been before her world fell apart and the friend you will continue to be. And love her child as you would have done regardless of this learning difficulty.

She'll get there and so will you x

devientenigma · 29/03/2011 19:09

Hi, when my son was born, a little over 10 year ago. We found out he had a serious heart condition, then they queried down syndrome, which shockingly at the time he test positive.
I didn't want to see any of my friends. I felt how could I of done this. Also one of my friends lost a little boy with a heart condition so didn't want to upset her.
Anyway she was the 1st one to barge her way in and to be honest I'm grateful she did, as I would of probably dwelled on my sorrow. This gave me the encouragement to get out and about.
She also came to see me, she had to as my son was still in hospital. She got me a "cos we are friends" card and a huge bunch of flowers, it was so sweet.
She sat and talked with my mam and by the end of the visit I was sitting there joining in. Don't know if you are able to do anything similar.
However I do agree, keep everything the same, tell her you will be there for her as and when you can. Remember she is still a baby x

vjg13 · 29/03/2011 19:14

I think that just understanding that your friends are at the start of a more difficult road ahead in their lives is enough. They need time and support but lots of facts and figures and links to websites or organisations isn't the way to go. That may be helpful much later on. I would offer childcare for thier other children as they may have lots of hospital appointments depending on their baby's health.

devientenigma · 29/03/2011 19:18

I agree with vjg I was dropping the other kids off at school, then rushing to hospital. My LO was in nursery at the time, so was collecting her at 11.30 and straight back to hospital. Then when hubby came in from work, we had tea and all went back. This was on and off for years and as he got older, hubby used to stay the night, go to work from hospital, school drop off, back to hospital, school pick up........you get the gist

Original poster
SlightlyJaded · 29/03/2011 19:29

Some really good advice. Thank you.

OP posts:
Original poster
SlightlyJaded · 29/03/2011 19:32

I can definitely help with practical thugs like school runs and childcare. And I don't feel pitying so hopefully I won't look or sound that way either.

Thanks again

OP posts:
Al1son · 29/03/2011 19:48

Let her tell you all the things she is upset and worried about over and over again. Don't try to give her solutions to all the problems or try to get her to look on the bright side. She's got a new future to get her head round and someone letting her say it all out loud over and over again could be just what she needs. Lots of friends will listen once and their eyes glaze over if you mention it again.

WipsGlitter · 29/03/2011 21:21

Take your cue from her. With some visitors I talked about it, with others I didn't. (my DS has Downs). Let her tell her birth story (and then my waters broke everywhere, was pushing for 92 hours etc, etc) I didn't really get to tell mine as the focus was straight on the Downs. I'm not sure there is a right and wrong, one friend if DPs was very positive but he didn't appreciate it.

Agree with impress go easy on the "positive downs syndrome" stories, we got so many of these it became a bit of a running joke for me and DP.

And point her here! Lots of others in the same boat!

devientenigma · 29/03/2011 21:36

I detest positive downs stories also, you don't know how the road will turn until you are travelling along. The more you put in the more you get out is a myth, if it's not in there to give................the only tip I can give for anyone reading is......tap the tongue it automatically goes in. I used to also say tongue in. Now he just needs a verbal prompt, he looks so much better. However there will be times (breathing issues) where the tongue will need to protrude but these times you will grow to learn when they are needed. Hope that makes sense.

WipsGlitter · 29/03/2011 21:40

You gave me that tip when I first posted here. We all do it now, my three year old says "tongue in" to his brother!!

Also beware the Holland/Italy thing. Some love it, some hate it.

devientenigma · 29/03/2011 21:46

OMG Wips did I, better still.....does it work???

It does for us!!

EllenJane1 · 29/03/2011 21:59

Welcome to Holland. Very schmaltzy but quite a good analogy if you can put up with the sentimentality. Now is definitely too soon.

ladylush · 29/03/2011 22:09

Slightlyjaded - you sound like a lovely friend. Keep doing what you're doing.

Thomcat · 29/03/2011 22:18

Hi SlightlyJaded
I haven't been on Mumsnet for so long (but have been a memeber since 2003) so am pleased to have come across this thread.

I have a DD who is 9 and she has Down's syndrome.
I didn't know Charlotte had Down's syndrome until I held her for the first time and I saw that she had Down's straight away.

I coped very well with the shcok I think but I did go through a sort of grieving process for the child I thought I was having if that makes sense. I had a girls name in mind shold I have had a girl and as soon as I gave birth to my baby I knew I didn;'t want that name for her. This child, a child with Down's syndrome had to have a new name, one that was for her, not the baby I imagined.

I spent a day crying and then shook myself and got on with being a mum. She was beautiful and mine and I loved her. Yes I still had tough days, tears were still shed but I got on with being proud and doing all the things a new mum does.

The best reaction was from a friend who burst through the doors of my hospital room bearign flowers, champagne and an outfit for my DD and kissed me, griining and said CONGRATULATIONS' in the most natural happy way and then asked to hold her and told me how beautiful she was. It was great and just what was needed after the teary hugs I'd received from everyone else.

So my advice right now would be to be happy for her.
She has a new baby. So she has Down's syndrome, whatever. Right now, a new life has entered the world, your mate is a new mum - celebrate.

All the other stuff will come and it'll come a day at a time.

I remeber thinnking - what's the big fuss about about having a baby with Down's syndrome? It was easy peasy. It's harder now but I've had a londg slow build up to this and it may be hard in some ways but I thuink myself blessed to have a daughter like Charloote. She's bloody amazing! She's also bloody hard work and a stubborn little shite at times who drives me crazy with her 'no I won't's' etc but she's all mine and I love her inconditionally, as I do my other 2 little monsters. They are all just as eay / difficult in their own ways.

Anyway - enought of me - congratulations to your friend. She's about to enter a whole new world but it's got it's rewards and you're all lucky to have this little girl in your lives. Smile

PS - feel free to ask me anything, message me etc and l;ater on down the line I'd happily chat to your friend if she likes.