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SN children

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Original poster

my lovely neice ahs just been born and we found out shes down syndrome any advice?

36 replies

eastyorksmum · 19/10/2005 11:45

hello ladies im eastyorksmum from junie thread, as you can see, and my younger sister 27 has now had her baby girl 31/2 pound, even though she was 33 weeks pregnant, we think her waters started going, and the baby had to be brought through a section on sunday morning.

Our little girl is now been tested for downs syndrome, as her eyes and ears werent in the right position, now she isnt feeding proberly and has to have an opperation on her tummy because she isnt dijesting her milk.

I wondered if any of you lovely ladies had any advice for me and my family

OP posts:

carly82 · 19/10/2005 11:58

hi EYM
my older sister had a baby girl five years ago, the pg was fine she sailed through. it was only when she was born that they realised she had downs. she had a few minor problems but was fine. i would be lying if i said it wasnt a massive shock and a lot to take in but five years on she is the most happy bubbly little girl and to us shes just that extra bit precious. enjoy your niece

jacobsmummy · 19/10/2005 12:00

Don't have any experience with Downs Syndrome I'm afraid, but I know that a lot of mums on here do. Just wanted to say hi (and congratulations on becoming an Auntie) hope your little niece is doing ok.

buffytheharpsichordcarrier · 19/10/2005 12:11

hello - I have 2 nieces with downs (I am twice as lucky as you) and wanted to say that you all have a lot of happiness ahead of you as well as everything else. My nieces are 11 years old and a wonderful part of our family.
there was a thread a little while ago about how to deal with this situation, I will try and find a link
congratulations to your family.

anorak · 19/10/2005 12:22

I don't have much experience of Down's, but if your niece is anything like as lovely as Thomcat's little daughter then you have a treat in store being her aunt. Congratulations

Beetroot · 19/10/2005 12:27

This reply has been deleted

Message withdrawn

ThomBat · 19/10/2005 14:07

Hi Eastyorksmum

What lovley posts you've had back so far.

Has your sister had the results back yet, does your neice have Down's syndrome? I hope she's healthy whatever the outcome.

My DD was born nearly 4 years ago, a perfect, halthy little girl who has Down's syndrome.

My advice to you would only be just to treat your sister and her new baby the same as everyone else, becasue they are. Having a baby with Down's syndrome is really pretty much the same as having any other child. The Down's Syndrome Association has a poster of a little baby and it says 'Molly has Down's syndrome. She can't walk, talk or feed herself. But then what baby of 6 months old can?' or words to that effect.
Your sister will probably be offered, pendng her postcode, Portage (fab and she can set this up herself) and her Health Visitor will register her as having special eeds and she may well be offered physiotherapy, speech & language thereapy and occupational therapy. All great even though she may well wonder what she's dooing there at first. Your neives eye and ears will be checked on a regular basis as well. Other than thta really hon there's not much else to it! Your neice will take longer to do stuff, she'll be slower to learn than others, but she will learn. Whatever she's given, she'll give back, 100fold. She'll fill your lives with light and change you all forever. She'll never let you down, always make you proud. She won't wear the weight of the world on her shoulders. She'll be a strong willed, independent woman who although won't ever be a brain surgeon will touch everyones lives in a way that they never thought possible. You sister will grieve for the child she thought she was having and she'll cry at the struggle to get things done sometimes. She'll be ehausted with the forms, she'll find the fact that her 4 year old is struggling with her speech while her friends 2 year old is having full blown conversatios difficult, but she'll always be so happy that her daughter is her daughter and she'll feel blessed that such a wonderful person is in her life.

What more can I say other than congratulations and if you need anything else i'm never far away, just call and I'll be there to answer / support etc.
If your sister ever wants to talk to someone who's been there, and I've done it a few times before, then please, please get in touch and I'll give you my number and she can call me, or you can.

Love TC xx

anorak · 19/10/2005 14:09

Thomcat, you've done it, you've made me cry

ThomBat · 19/10/2005 14:20

oh no, Anorak! Bless your little cotton socks sweet! It's a good, positive post, not supposed to make you cry. ohhhh wish I could give you a right big old cuddle.

Actually let's tell eastyorksmum what your little girl said.

i met Anorak's DD and she said to me 'What does having DS mean?' and I started to explain how it meant that it takes longer to learn how to do stuff but she will do it. And she said to me 'my mum says it means having a really happy life'! Bless! What more is there to say aye??!!
She had it in one really!

PottytheVampireSlayer · 19/10/2005 14:24

That was a 'goosebumpy' post TC

PottytheVampireSlayer · 19/10/2005 14:25

Sorry eastyorksmum - should have said congrats to you on the birth of your niece. She'll be the light of your lifes I'll bet.

RottenRhubarbWitch · 19/10/2005 14:29

I have a nephew with Downs, he is adorable! He has the cutest little smile! Your family are very lucky indeed to be chosen to care for this very special child!

northerner · 19/10/2005 14:30

last week i got on a bus with my ds and he went and sat next to a boy with downs syndrome who must have been about 18. My ds and him struck up a conversation immediatley and were laughing and giggling for the whole journey. When we got off my ds said 'Mummy?' and I thought, oh no, what's he going to say, did he notice a 'difference' he simply said ' he was very, very, very nice wasn't he?'

Bless.

mizmiz · 19/10/2005 14:32

You're an inspiration Thomcat.
Wish I could put you and Lottie in my pocket for when I go and do home visits.

Congratulations eym by the way.
I'm a SALT and know many people with DS who lead completely normal lives (eg read and write,hold down jobs,live independently and have boy/girlfriends.)

ThomBat · 19/10/2005 14:33

You see it's northerner's post that made me get instant lump in the throatish! Not good when trying to swallow toffee popcorn! Far too hormonal to cope with lovley posts right now, i'm super soppy at the best of times

eastyorksmum · 19/10/2005 14:49

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

ThomBat · 19/10/2005 15:08

Sorry to hear she has had complications, poor little mite, not fair is it. Still they'll be sorted soon and it'll all be ok. Have they had it confirmed that she has Down's syndrome yet then?

Original poster

eastyorksmum · 19/10/2005 15:33

Yes my sis found out yesterday, she is such a lovely little thing, my heart goes out to my sis.

Ive had a good converation with my sis, and told her that our little girl is a fighter, and she will get through this, all i can do now is take one day at a time. I pray for our little girl,i think a lot of her complications are due to her been so prem too.

OP posts:

PottytheVampireSlayer · 19/10/2005 15:46

EYM - sorry that she's had some complications. As far as her heart is concerned please point her in the direction of Heartline. www.heartline.org.uk. There is a message board there and we have a couple of fairly new mums whose babies have DS and heart problems. Your sis would be made very welcome.

Dingle · 19/10/2005 16:01

I am sure there is downsheart too. I will try to find some info for you.

ThomBat · 19/10/2005 16:02

Heart problems are pretty common in children with DS but the other complications I've never heard associated with DS.

Edisvold uses Mumsnet but lives in Australia now so comes on during our night. Her lovely little girl has DS and she had heart complications to start. not nice, but I';m sure just a distant memory to Edisvold now, her little girl is doing so brillintly. I'm sure she'll be along to tell you about it when she sees this thread.

They've not had an easy start have they, your niece and her paretns, but before you all know it it'll be like the time in hospital never happened.
I look forward to that day for you all. Come on and tell us how she's getting on won't you. TC x

Dingle · 19/10/2005 16:04

Not used the site before but it may be of some use.

Downs Heart Group

RottenRhubarbWitch · 19/10/2005 16:05

My nephew had heart problems too, they operated on him at 3 months old. They said it was 50/50 at the time. He may need later operations as one of his heart valves is still leaking, but other than that, he is a very happy little boy who has just started running around and trying to talk. He recovered remarkably well and was out of hospital long before they thought he would be!

I know every extra diagnoses seems to bring more bad news, but you have a very special little niece there, so try to focus on the positives. Perhaps print this thread out for her parents to read?

Dingle · 19/10/2005 16:06

Hi TC, or should I call you TB!!! How are you all, bump included. Must be getting quite round now!

ThomBat · 19/10/2005 20:39

Hi Dingle - Round? Ha haaaaaa, my bump looks massive! This is how big I was full term last time and I have 10 weeks to go

cori · 19/10/2005 20:44

Thomcat, I really want to me your DD one day.

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