thanks rosimin

i am so glad we didnt know before she was born or who knows what we may have done.

i would of missed out on my beautiful little girl.

glad you liked her montage*** alt="" src="http://my.bounty.com/smiley/msn/regular_smile.gif" />

sally x

Thanks she really is gorgeous. How old was your son when he had his heart op and how did he cope with it.

hi I just wanted to say congratulations on  the birth of your daughter. My son is now 15 mths old, like your daughter he has DS and like you I was shocked by the diagnosis but that passed so quickly when i realised he was just a baby like any other. i realised that my job as his mum was just the same as it would have been had he been born chromosomally perfect. he still needed feeding, cuddling, loving and  his nappy changing!  He was tiny too, just 4lbs 7oz, (compared to my last 11lb bouncer he looked impossibly small), he was a  little prem at 36 wks and also had a heart condition which has been repaired.  Im glad you have good support and I know she'll bring you all great joy, enjoy her every single minute- you'll soon find out that really she's the perfect one and its the rest of us that are flawed. 

sorry that shouldve been xx

Oh sally313131 I just wanted to say your montage of Lucy Mai is absolutely gorgeous! she's a beautiful little girl and you must be so proud. 

xx 

Hi all, our baby daughter was born on 2nd July she weighed 5lb 9oz and has Downs Syndrome and also has a heart defect which in time wil probably need operating. At all my scans i was told all was well with the baby i knew she was smaller than my other two but was in no way prepared for how tiny she was or her condition.

We had a huge shock and cried alot for her. This soon passed with the hlep of family and freinds and the realisation that our beautiful baby is very special and has already developed her own personality our lives will have changed but it makes you appreciate things more and make the most of life there will be a lot of new challenges, ups and downs but we will take each day as it comes

What it has shown me is that there are no guarantees and they get it wrong both ways. Its good to talk to others who have been through it and no matter what the outcome your baby is special and you are special parents.

Good luck x

Hi Sian, Sally, Sharon and Katie

If it's any help, I have a Downs baby and she's absolutely lovely and a real character.

We chose not to do the testing because it took a long time and a lot of IVF to get pregnant at all, so we wouldn't have terminated for Downs anyway, and I didn't want to take the risk of an amnio, so we only found out when she was born.  It was a big shock, and I cried lots in hospital, but have got more and more bonded as time has gone on. 

One of the many things I have learned about Downs (and I guess that this applies to other chromosomal defects as well) is that there are a lot of symptoms, features and problems which Downs children can have, but they don't have them all.  The same goes for 'soft markers' - I have heard several people talking about a leaking tricuspid valve in the heart being a soft marker, but my DD didn;t have that.  Her femur is short, but I just put that down to both her parents being short.

The figures for Downs is something like 1 in 1000, with 600-700 Downs children being born every year in the UK.  That's not very many out of the total number of babies born, so it is fairly unlikely.

I hope that everything goes well for the rest of your pregnancy, but if I can help, please feel free to IM me

Essex Girl x

Hi Sian,

What a co-incidence, I have been in the bristol fetal medicine unit for the past few weeks as well.  My baby also has a echo-genic bowel. We have had our bloods taken and both myself and husband are CF carriers so the consultant is quite sure that our baby has CF. CMV has also been mentioned.  I know how you are feeling as it is a huge shock and a very upsetting and bewilding time for you. We have decided not to have any more tests or to find out anything else as after talking to the CF society and friends and family, we are going to give our baby a chance.   We feel like a big weight has been lifted off our shoulders even though the problem has not really gone away. Please feel free to Private mail me if you want to chat more as we probably have been seeing the same consultants! Take care and what ever your decisions are, you must make them for yourselfs and not be rail roaded into anything you feel is not right for you.     

 Take care and keep strong

Hi Sian, I can;t help regarding scans and tests etc but just wanted to reply. My little boy was born with downs syndrome in June 2006. We didn;t know until he was born as my blood tests were low risk at 1 in 956. Two scans showed he had short femur bones but we were told this was nothing to worry about - I have since found out that this is one of the markers of downs syndrome. We were devastated initially and so unsure about what the future held but now 2 years on we couldn;t be happier - we;ve got a gorgeous boy who is always laughing and he is a total joy. I know you will be worried sick but you will get through whatever is thrown at you because you already love your precious baby. There is a great downs website for parents if you want to have a look www.upfordowns.co.uk and feel free to join and ask any questions. Are you having any more scans? I wish you well and hope to speak to you again, Claire xxxxx

Hi Sian, they aren't always right i had lots of these so called markers with my eldest daughter she had 4 cysts on the brain which were a sign, i was monitored for 4wks the cysts went to my relief then to be told that she had a thickness at the back of her neck so she had higher chance of being downs, they offered me the cvs which at the time was still under trial so basically i was a guinea pig they couldn't offer any miscarriage data as i was the data. I ended up having it as i was going insane, she was fine after all the worry they were even offering me a termination if i wanted it baring in mind i would have been 25wks pregnant babies can sometimes live from then. I couldn't believe it, but it bloody hurt i couldn't walk at all the next day i was doubled over it felt like i had been kicked 50times in the stomach. I know it is a worry and like you i was given all the ratios of having a downs child mine in the end worked out to be 1 in 250 which now i know isn't that bad for every 250babies born 1 may be born with downs it is still good odds, they just try and scare you to death with them. Hope it all turns out well for you are you having any more scans or tests? Sharon x

sorry the link didnt work

One more try

http://s218.photobucket.com/albums/cc300/Sallyyoungman/?action=view¤t=praderwilliandLucyMai.flv

Hi Sian

Hugs to you

I know just how you are feeling as I had many pointers to downs syndrome and I felt as well that things were not right in the pregnancy,less movements,extra fluid and many other things and was convinced that my baby was going to have downs syndrome and had prepared myself for it as best as I could but it was always a dark cloud over me during pregnancy and I really didnt know how I would feel.

I became a hermit during the later stage of pregnancy and cut myself off from friends as I didnt want to talk about the new baby and my fears of what she would be.

When she was born it was clear she was not downs syndrome and all the peadiatrics said she was fine and just a bit floppy due to being a bit early and small.

I came home from hospital with a baby that couldnt even suck and didnt cry at all and I knew all was not well and to cut a long story short I pushed for tests and after she was 6 weeks old it came back that she had prader willi syndrome.

After expecting her to be downs syndrome you would of thought I was prepared for it but I was besides myself and used to just lay down with her and cry so much her hair would be wet through from my tears and christmas time was a complete meltdown for me,although also a turning point as I talked about it and let out all my feelings and from then I have not looked back..

I am besotted with my daughter and I could explode with the love I feel for her,when she was diagnosed I felt like i would never bond with her.

She has made me look at everything in a different light and she is a true inspiration to me and our family and yes she is different to other babies her age but so what!!!

I could never say that I would not have it any other way as if they could take away the pws then I would in a heartbeat but it does not stop how I feel about her she is AMAZING.

Good luck and remember that they dont always get it right and there may be no problems with your baby when he/she arrives but what I wanted to say was you will cope and come through it whatever,trust me if you had seen me at christmas the wreck I was to what I am now then you would know what I am on about.

Here is a link to a video I made for Lucy Mai

Le<embed width="448" height="361" type="application/x-shockwave-flash" wmode="transparent" src="http://i218.photobucket.com/player.swf?file=http://vid218.photobucket.com/albums/cc300/Sallyyoungman/praderwilliandLucyMai.flv">t us know how things go

Sally

Hi, I hope some one on these pages can help me?

I spent the day at the Fetal Medicine Unit in Bristol yesterday as bump is approx 4 weeks small (measuring 18 weeks not 22). The specialist said that the gut is showing white on the ultrasound as well, which can be an indicator of many things, including Downs, Cystic Fybrosis and Cytomegalo Virus, when taken into consideration with the size of the baby.

I had my bloods done and came back as a 1:3000 risk for Downs, however he did say that because of the other symptoms this risk is now probably higher.

If it does turn out that bubs has any of these things it won't make a difference to whether we continue with the pregnancy as we are happy to have a baby whatever the challenges.

I just feel a bit out of my depth, and wondered if anyone who has been through a similar situation can give me a bit of guidance on the rest of the pregnancy and first few months?

Sorry for the long post!

Sian - 22+3