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Downs Syndrome Question

32 replies

LeBe · 11/09/2006 14:29

Sorry to post this here dont know if it is what usually is talked about. Ive so=poken to a couple of you before (Thomcat,Evisold) but for everyone else i am 32 weeks pg with a little boy and was given quite a high-risk for DS. I have totally come to terms with this and really believe it will not make a jot of difference in my eyes. However i've been watching Eastenders with the story of Honey and Billy and i know soaps are not the best for actual feelings and situations but watching how they have been worries me that i will be the same if it happens. I just wondered if anyone who has experienced this can say whether this actually a common reaction or not. Sorry for rambling xx

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pixiepins · 11/09/2006 14:39

i can't say what it's like to have a baby born with DS but i can tell you that when my lil boy was born we didn't know he had a cleft. what ever the problem i do strongly believe that it's very very important to talk to people and share your feelings!
i'm sure there are others on here that will be better able to advise you as far as DS goes but any problem a baby is born with can be a shock.
i would'nt worry about how you will feel...you seem like you've started to get your head round it anyways...your baby will be precious cause it's yours!
good luck!

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Blu · 11/09/2006 14:47

LeBe - hello .
I think that the big thing in EE is that Billy and Honey didn't know, and weren't expecting a baby with DS. Thomcat wrote quite openly about her response on one of the EE threads here on MN.

But you do know that there is a possibility that amongst the other things yu will find about about your new baby, one is whether he will ahev DS. You are as prepared as you can be.

My DS was born with a congenital abnormality of his leg. I knew beforehand (some of it, at least - that he would have talipes, or clubfoot), and so whn he was born I wasn't suddenly adrift with something I wasn't expecting, 'aaah, he's only got 4 toes, how sweet' instead of 'eeeek, what's the matter with his foot!!'

I'm not saying it will be easy - I wouldn't know, anyway, buut i do know that surprise or preparation can make a very big dfference.

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Blu · 11/09/2006 14:49

Sorry - that was terrible typing, I hope you can read it!

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LeBe · 11/09/2006 15:02

Thankyou for the nice responses, i think you definatley have a point, i know there is a chance whereas im sure it is more difficult as a shock, thats not to say im certain it will be the case as i know alot of people have had a much higher risk than me. Blu do you happen to know which thread Thomcat left her message? Thanks

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geekgrrl · 11/09/2006 15:11

LeBe, personally speaking I found it quite similar (but I didn't reject my baby ) - the feeling of utter devastation was the same and yes I cried and cried, all my hopes and dreams seemed to have been shattered, it felt dreadful.
HOWEVER - and this is a big HOWEVER - I was completely, utterly unprepared for there to be anything 'wrong' with my baby. I was 24, had a 1.5 yr old dd without anything already and had a picture-perfect pregnancy. Dd's DS took me completely by surprise. I didn't even know much about DS and had visions of people with tongues lolling and pudding bowl haircuts in my mind (as you can see here , dd does not look like this.). I thought it was something that only happened to women over 40.

I think all this hugely contributed to how shocked I felt at first - if you are prepared for whatever comes your way, I am sure it will be a lot easier emotionally.

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Dingle · 11/09/2006 16:40

I didn't know that Amelia had DS, but suspected it as soon as she was delivered onto my tummy and she looked straight up at me. A few hours later the hopsital confirmed my suspicions and wanted blood tests to confirm.

I don't deny, the early days were really hard. I supose it was such a mixture of emotions. Being so tired from labour, shock, dissapointment, bitterness, frightened of the unknown.....but I still had this beautiful baby girl who needed my love and care, and I never doubted my love for her.

I think it was harder because I didn't know my little girl, I hadn't got a clue about DS!

Sometimes I wonder if it would have been better to have known, not that I would ever had done anything about it, but just to have know. To have the "shock" element taken out of the equation IYSWIM.

On the other hand, some of the literature I was given in the early days seems just so negative. Your baby could have hearing problems, heart problem, eyesight problems, low muscle tone,....
but on the other hand they might not and plenty of babied born without DS can haave these problems too!

I can't deny it has been a long difficult road, but as many mums on the SN threads will say, unfortunately it's not just caring for a child with SN that is the issue it's the constant fighting for support and therapy that is part of the "package!"

Amelia is just about to start school and I am just SOOOOO proud of her. I absolutely love her to bits and all the fighting is just so worthwhile.

Now it's my turn to apologise for rambling!!LOL!!!

Hugs LeBe!!!!

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Dingle · 11/09/2006 16:47

Have you seen the "Just Kids" booklet?

There are some pictures here
of my little lady

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LeBe · 11/09/2006 17:21

Geekgrrl - so sorry, i knew i had spoken to others but i couldnt remember names, i blame it on pregnancy! I have seen the photo of your dd - i left a message as well saying how gorgeous she is.
Dingle - Dont apologise for rambling. I appreciate everyone talking to me and helping with my fears, and its nice that you all are so honest and dont feel like you cant say it was hard etc. it makes me feel that if i do struggle i am not a bad mum and that it is normal. Can i just say as well your daughter is so pretty and your son is a little sweetie too, you are right to be so proud of them. I just hope i make as good a mum as everyone ive spoken to on here! x

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Thomcat · 11/09/2006 18:02

LeBe - hi babes, nice to see your name come up again.

I would say that the reaction of Billy & Honey was very realistic. But realistic for a percentage of people, not for everyone.

They had no idea at all, not an inkling and the shock was huge. With that shock comes stress and stress can make you behave in odd ways. When a new mum, who is going through hundreds of emotions anyway, hormones flying, is also stressed and shocked, then she can feel as if she wants to reject her baby. She is traumatised and jut wants to blank it all out and wants nothing to do with the baby. That does happen. But, those feeling rarely last. After all, it's her baby, beautiful, healthy, and in need of his or her mum.

I didn't have an inkling, was a total and utter shok to me. I never for one moment felt as if I didn't want her. Day 1 of her life was weird. I didn't bond for the first day, but I didn't not want her. She was in intensive care, just precautionary, but in an incubator, wired up all over the place, I couldn't hold her, didn't know what was going to happen, and actually at that point cos of where she wsa and my ignaorance, I wasn't sure she was going to live so I was scared to love her. IU stood back a bit and kept my defensives up, remained a bit distant. Then she had her hearet checked. That trip up to the Royal Brompton was the worst day of my entire life. The journey home was hte best. She was fine. When we gotr back they took er out of intensive care and into special care and I held her for the first time since I'd given birth to her.

I feel totally, and utterly and completley in love with her.
She was beautiful and I loved her with every fibre of my body. It was overwhelming.

Never looked back.
Couldn't wait to take her home and show her off.
She was the apple of everyones eye, and everyone who met her was touched by this wonderful, sweet, quiet, amazing, very special little girl.

Some people, those that know before they give birth have none of thisat all, and just get on with having had a baby.

but in all cases the outcome is the same. They arew loved and adored and the bet thing that ever happened to us. There are the light in our lives and we are all honoured to be parents to them. The days of feeling some sense of shame have long gone. I think the general feeling of children with Down's syndrome is that they are a blessing and we are very, very prod of our kids.

Hope that helps, but you know to ask me anything you like.

Lots of love Lebe. Hope you're not feeling too tired and are able to look forward to the birth and meeting your DS or DD.

TC xx

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eidsvold · 11/09/2006 23:22

I haven't seen the Eastenders show - being here in Aus but I can share what we experienced. Even though we knew beforehand the day it was so callously confirmed by doc I cried as I had never cried before - part of it was the fact it was day3 or whatever and crashing hormones - part of it was how am I going to do this little baby justice - I know nothing about raising a child with sn, How am I going to protect this little one from the ugliness of discrimination etc.....Am sure it was not helped by the doc just dragging dh adn I into a corridor, opening dd1's file, pointing to the lab report that confirmed her ds, nodding at me and then shutting the folder. Poor dh could not see what the piece of paper was so I had to tell him.

In fact I was so distraght the midwives on the ward rang SCBU because they thought Dd1 had died!!

After I saw a note in Dd1's medical record about mum being teary I resolved never to cry in front of them again.

And you know it is cyclic not a timeline of emotions etc that you go through. I adore dd1 and like the others am soooo proud of her and her achievements. But every now and then something happens that brings the old feelings back and you get teary and deal with it and then move on to the next stage.

I have recently been to support a couple who have just had a little girl who was born with down syndrome and they were shocked and upset and angry and every emotion you can imagine. The mum seems to have come to a point of acceptance and embraced her daughter - dad is still angry.....

sorry for the ramble but I hope it helps..

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eidsvold · 11/09/2006 23:27

i second what tc said - no way did I ever NOT want her... even when we knew prior to her being born. She was our daughter/baby and that was it.

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eidsvold · 11/09/2006 23:30

i can share a story of a couple who had a little one born with down syndrome. They were advised to leave the babe at the hospital and go home and concentrate on their other children.

When they got home and explained to their other children, the kids cried and the little boy asked if they would give them away if something was wrong with them - innocence of children's point of view made the parents realise what they truly felt - raced back to the hospital and took their baby home.

sorry story is longer but that is the gist of it.

TBH every story is different.

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eidsvold · 11/09/2006 23:31

sorry keep adding as thoughts come to me - the greatest upsets that I have experienced where dd1 is concerned have been caused by others - their actions and attitudes..... nothing dd1 has done has caused me distress - might have driven me nuts - as all kids do but never upset me.

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eidsvold · 11/09/2006 23:34

Our dd1 was born with a serious heart defect( also knew about before she was born but not the extent of the damage iyswim) and was rushed to ICU when she was born etc so there was all of that to deal with - she was in SCBU for the first three weeks of her life - tough to deal with. I did not get to have a proper cuddle with her for a few days - very sad - when all you want to do is hold your baby.

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LeBe · 12/09/2006 09:39

Thomcat - Hi thanks for replying i appreciate it, i watched last night eastenders too, dont know if you saw it but when honey was holding her and so obviously didnt want to be there, even though it was not real and it wasnt even my baby, my heart broke. I think if that is how i feel about another baby i must feel the same about mine surely. I am mostly scared that i will reject my lo and not be able to help it if you see what i mean because i know i am lucky to have a warniong in advance but i still have that high chance of everything being fine, therefore i think if it is actually true i may feel differently. All i do know for definate it that i was told i couldnt have children by various doctors so when i fell pg it was like a miracle and i have never wanted anything more, I have suffered a bit through the pg and had some problems but every time i feel him kick i just feel like the luckiest person and i hope this will carry me through any problems or fears i may face.

Evisold - Thankyou for your replies also and dont worry about the rambling i am really grateful for all advice, and stories. I feel that what you say is true because my main fear id lo is born with ds or any other sn to be honest, is not that i wont love him or i will be ashamed of him, its that i do not want him to have to face life with others judging him and tormenting him. I can see why it makes you upset especially children who dont know any better. xx

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Thomcat · 12/09/2006 11:14

lEBE - FROM THE LITTLE i KNOW OF YOU YOU ARE OBVIOUSLY A VERY TOGEWTHER, THOUGHTFUL AND CARING PERSON. Whoopps sorry about caps.
If you didn't care you wouldn't be on mumsnet, asking questions and thinking about stuff. If, and it's a pretty big if, your child does have Down's syndrome, I have no doiubt that you will love him or her just the same.
Noone's saying you won't cry, nobody is saying it doesn't matter and iy'll be easy etc but it absolutley will be ok in the end.

I sometimes feel sorry for the kids in Lotties school and around her that don't have special needs! She is just the apple of everyones eye. And I won't be the only nother with a child with Down's to tell you that. The other kids adore her, she's everyones favourite.

And Down's syndrome really, really isn't that bad. So they are a little slower than other NT kids. So they have to fight harder to learn stuff. What's so bad about that???? Nothing, absolutley nothing. They don't carry the weight of the worlds on their shoulders. The pressure for them to pass a'levels, get a good job, etc, allthose wprries are taken away from them and from us. Any small achievment in their lives is such a huge cause of celebration. People are constantly so prod of Lottie.

She started at her mainstream big school yesterday. I can tell you now, no word of a lie, she was the happiest most excited child going through those doors and the smilist face coming out. To the point that other mums were all commenting.

At sports day at her nursery she was the only kid that all the other mums were taking pics of other than their own and everyone was cheering her name.

She gives the best kisses and cuddles, adores her baby sister, even if she does also clunk her round the head with a recorder every now and then! She does everything that all the other kids do, just maybe not as quickly.

I think Honeys reaction last night was a bit extreme. I dodn't think that many other mums walk out of the hopistal on theior babies and deny their existence at all. But it's a soap, it has to be a bit extreme to make it the cliffhanging moment where ytou have to tune in. Like Corrie at the moment and that couple who have had a baby and the mum took him back to the hopistal as she says it'snot hers as her PND is so bad, he husband ends up sectioning her!

Don't worry too much about Eastenders babes. I don't know anyone personally who reaction even remotley like Honey. Not saying that some mums don';t struggle with bonding and some feel rejection early on, but it's not always the case at all and like I say, it doesn't last.

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geekgrrl · 12/09/2006 13:42

ok, have just caught up on EE (first time ever that I've watched it) - obviously people react in all sorts of ways, but I don't think that this level of rejection is common.
As I said, I was a blubbing mess for about two weeks when dd was born, but my sadness was mainly about the fact that (so I thought) life would be so hard for dd2. I did feel sad for myself and the rest of the family too, but the sadness for dd2 herself was far greater.
We put on a brave face to the outside world, and dd2's birth announcement said something along the lines of 'dd2 has an extra chromosome 21, a condition known as Down's syndrome. It is a small part of who she is and who she will become'. I didn't really feel like that at the time I guess although I do now. Dd2 is the middle child, she's one of the gang. I don't think about her having DS during normal everyday family life. She's a little sunshine most of the time and the easiest child of my three.

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Thomcat · 12/09/2006 14:00

I was looking back at an old video of Lottie when she was 1 at Xmas time. I said to my mum 'oh, how strange, you can really tell she has Down's syndrome there can't you, I dind't think you could really tell at the time'. And that's becasue I just saw / see Lottie, I didn't see her as child with Down's syndrome, she's just Charlotte.

I remember saying to a guy in a cab on the way to the airport, 'yeah she has Down's syndrome so...' blah de blah (can't remeber why I bought it up) and when he said 'yeah I know' and I thought, 'what, how did you know that?'.

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Dingle · 12/09/2006 14:34

Funny you should say that TC, because I was almost the exact opposite. As a baby I found it really hard to see past the "Down Syndrome features"...but I suppose as she has grown into her own little person, I can now see and know Amelia for who she is...even if I still don't understand some of her behaviour!! The little madam that she is!LOL!

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geekgrrl · 12/09/2006 14:45

I think it's the rose tinted glasses - there's a picture of me and dd at 15 months on the DSA homepage (in the montage, one of the squares on the left).
Dd looks so fat in the picture and her hair's all wispy and tufty, but at the time I thought she was just the most gorgeous baby known to man.

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LeBe · 12/09/2006 14:59

Thomcat - thankyou for writing that, it was really sweet of you. The biggest thing i want to achieve is to be the best mum i can be so for someone who doesnt know me very well to say such kind things is really nice.

Geekgrrl - i am very privilaged that you watched EE on the srength of this link, its good to know that although people do feel this way it has been blown out of proportion for the shows ratings.

Also i can completly understand why you all think your children are so lovely, not only does everyone think there child is perfect but i have seen pictures of some of your lo's and they are totally gorgeous in my opinion also. xx

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Thomcat · 12/09/2006 20:45

Well I'm glad you think it's sweet but I really mean it. I don't know you, but it's pretty easy to get a feel from someone from posts and the fact you've cared enought o ask questions, come back and ask more. I said to you before it's great that you come back and keep asking things. So many post once about these subjects and then you never hear from that again.

I reckon that baby in there is one lucky kid, seriously.

So, when is the due date.
You will let me, us, know how everything goes won't you?

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LeBe · 13/09/2006 12:10

Oh sorry i so busy talking about other things i forgot to tell you the basics!

Lo is due 6th November, it is a little boy, and he is not very little!!!
Everybody thinks he will be born next month as they changed my dates around so much, but i must admit i will be quite glad if he does, its not been the easiest of pregnancies but he is definatly worth every second.

We are going to call him Alfie Jack, and also he is going to be the most so=poilt baby i know! He already has more clothes than me and his dad put together, but my mum does own a baby shop so i suppose it is to be expected!

Hope your los are ok it was lovely to see a picture of Lottie she really is a sweetie and its good to know she is doing well.

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LUGGY · 13/09/2006 13:40

Hi,
New to forum so do bear with me!! My daughter was born six years ago and was diagnosed with DS not long after delivery. I have been watching EE recently and reading messages and it has brough back alot of feelings regarding her delivery etc. We didnt know she had DS so it was devastating news but there was never any rejection. It took a while to accept our different but gorgeous little girl and now here we are six years later with mountains of stories, funny and sad, experiences, advise, questions, just like any other parent in the World. What annoys me most about the EE storyline is the fact that the scriptwriters chose to use Downs Syndrome Baby instead of a baby being born with Downs Syndrome. After all first and foremost she is a individual in her/his own right who is too easily labelled by ignorance. Any one agree with this concept?

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LeBe · 13/09/2006 16:07

Hi Luggy, You have really hit the nail on the head with what you say about ignorance, this is my main concern that my little one will be judged and put into a box because he has a special need, and that people wil over look the other things like what he enjoys doing etc. I really hope this wont be the case and children in the future.

Also thanks for sharing your story about your dd i do appreciate your stories, and i think that all children have ups, downs, hard times and good times and this will be no different for any child. Plus im not saying i wont be upset if lo is diagnosed with ds (or anything else) and it wont be hard and emotional but i know formost that he is my son and i will love him 100% x

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