|
hello
Apr 24, 2007 21:29:32 GMT
Post by danielle on Apr 24, 2007 21:29:32 GMT
hi everyone,
we are at 22 wks and have just had the detailed scan, which revealed a measurement of the nuchal pad to be around 6.6mm, we have been refered to a specialist unit next week, its all very confusing and we are not sure whether to have amniostesis or not, this will be our third child and first time we have been through anything like this, we are excited and nervous at the same time, could anyone share any similar experiences with us and what to expect from now on. - thank you terry and danielle
|
|
|
hello
Apr 24, 2007 21:48:30 GMT
Post by Tace on Apr 24, 2007 21:48:30 GMT
Hi Terry and Danielle, welcome to the site I hope you find it helpful, sorry I cant answer your questions, we did not know about Leo's Downs until after he was born but I am sure others will be more helpful, I just wanted to say hello
Tace xx
|
|
|
hello
Apr 24, 2007 22:50:58 GMT
Post by mum2rachel on Apr 24, 2007 22:50:58 GMT
Hello Danielle & Terry, We also did not know about Rachel having Downs syndrome until after she was born, so sorry we can't help with any experience as we have none . All I can say is have a good look around this site because it has certainly helped me greatly with what it means to have a child with Downs syndrome. Take care.
|
|
|
hello
Apr 25, 2007 10:25:32 GMT
Post by tina79 on Apr 25, 2007 10:25:32 GMT
Hi Guys,
I'm affraid like the others we didn't find out about Brodie having downs until after he was born so can't offer any advice to help with the amino decision.
Can imagine how confused you are though as its a lot to take in and doctors tend to either bombard you with information or give you no help at all. I have found this site brilliant though as you know all the info is from people who have experienced things first hand, hope you find it a help too x x
|
|
|
hello
Apr 25, 2007 10:40:36 GMT
Post by njcorbett on Apr 25, 2007 10:40:36 GMT
Hi Danielle & Terry,
We didn't find out about Lucy's DS until after she was born either. We didn't have any tests so can't offer any experience - but that's a personal thing only you can know what's best for you. I totally agree with the others regarding this site. I only wish I had found it sooner.
All the best with whatever you decide. Nicola
|
|
|
hello
Apr 25, 2007 16:54:21 GMT
Post by sarahncharlimai on Apr 25, 2007 16:54:21 GMT
hi danielle and terry, myself and my partner had a high risk result from t triple test and so we decided to have t amnio, i didnt think i could go through with t rest of my pregnancy not knowing and felt that we needed to know one way or the other so we had the amnio a week later we found out our baby did have ds we then had a very detailed scan of t babys heart which revealied that our baby had avsd. Aborting never came into it we had tried so hard for t baby that we knew that we would love her no matter what. (dont get me wrong it was a very emotional time) so from then on i was closely monitored had extra scans traveled to and from birmingham for her heart check until i went into labour at 37wks and gave birth by emergency c- section to a beautiful little girl. I can not tell you wether to have t amnio or not thats something only you can decided between yourselfs you have to do what is right for both of you, here if you need a chat all t best sarah mark n charli mai x x
|
|
|
hello
Apr 25, 2007 17:57:39 GMT
Post by max on Apr 25, 2007 17:57:39 GMT
Rilith is the lady you need - I think her daughter Holly had a nuchal measurement but I can't remember what it was! (I didn't have it but was told after Caleb was born that they doubted that anythignw ould have shown up on any scans as he has no physical problems)
It's great that you came on here to find out more - Well done! I wish I'd have had that forsight! Downs is not the terrible thing it is made out to be.
We're always here for advice (if we can give it!!!)
|
|
|
hello
Apr 25, 2007 20:56:26 GMT
Post by shirley on Apr 25, 2007 20:56:26 GMT
Hi There and welcome to the site, I am sorry I cannot offer you any advise as we only found out there was a high chance of DS at 35 weeks when they found her heart defect. I agree with everyone else though , looking through this site will help you im sure, to get through this very difficult time. Just remember that we have all been through most of the feelings that you are going through right now and are always here if you need a chat , keep us posted on your pregnancy, love and hugs Shirley xx
|
|
|
hello
Apr 26, 2007 8:34:29 GMT
Post by heather1979 on Apr 26, 2007 8:34:29 GMT
Hi Danielle,
I had the nuchal scan at 12 weeks as my son has williams syndrome and i'd had 3 miscarridges and it came back clear as did the blood tests and the 16 scans we had. it was only after Aaliyah was born that it was found she did have Downs syndrome,shes now 3 1/2 and is in mainstream nursery shes just like any "normal" child and we wouldnt change her for the world!!! Take care Heather.x P.S There are lots of people on here to give you any help of or advice you made need.
|
|
|
hello
Apr 27, 2007 12:28:07 GMT
Post by pinkshell1110 on Apr 27, 2007 12:28:07 GMT
hi there terry and danielle congratulations on the pregnancy ,i too didn't find out our son had DS until he was 8 weeks old so sorry i cant help but i would like to wish you both the best of luck with whatever you decide ,and dont forget we are always here if you need us lots of love shell,charlie and jasmin xxxxx
|
|
|
hello
Apr 27, 2007 13:28:43 GMT
Post by claireyd22 on Apr 27, 2007 13:28:43 GMT
Hi Terry and Danielle. So sorry that I can't help regarding the tests, my 16 wk blood tests gave a risk of 1 in 956 so I didn't have any other tests done, then we found out that George had got ds after he was born. It must be a very confusing time for you at the moment but there are lots of parents on here to talk to. I've found this site to be so helpful, I wish I'd discovered it when I first had George. As a mum to a baby with ds though I can honestly say it isn't what you imagine it to be like. George is a fantastic little boy and I wouldn't be without him. We all feel so much love for him and I could burst with pride when he does something new. I hope this has helped you, keep in touch with us on here. Best of luck with everything, Claire x
|
|
|
hello
May 1, 2007 18:23:46 GMT
Post by danielle on May 1, 2007 18:23:46 GMT
Hi all, We went to Cardiff for another scan yesterday, and they found another 'marker' for chromosonal abnomalities. it was an increased measurement of the ' Cisterna Magna' which is in the head. We turned down the amnio so now we will be monitered. So each month we will go back to Cardiff and inbetween we will be seen here in Haverfordwest. Will keep you posted. Danielle and |Terry
|
|
|
hello
May 1, 2007 18:38:21 GMT
Post by claireyd22 on May 1, 2007 18:38:21 GMT
Hi both, Sorry to hear that you didn't have good news at your scan. Its going to be an extra worrying pregnancy for you now isn't it. Keep in touch with us on here though. When is your baby due? xx
|
|
|
hello
May 1, 2007 19:22:37 GMT
Post by Daniella on May 1, 2007 19:22:37 GMT
hi danielle, we live in Cardiff, if you like, next time you are in the area we could meet up, with joshua, so you can see him and see for yourself that it is okay and that downs isnt the end of the world if you want to read joshua's story, i have just posted it in the downs syndrome awareness week thread in the promotional material section
|
|
|
hello
May 1, 2007 19:54:32 GMT
Post by Tace on May 1, 2007 19:54:32 GMT
Hi Danielle and Terry, good to hear from you again, sorry the news was not the best. Sending you positive vibes and buckets of luck for the rest of your pregnancy and please do keep us posted, was just thinking about you both the other day so was nice to see your message. I hope you have found the site helpful and informative, if you have any qustions no matter how silly or trivial they seem ask, I'm sure one of us will be able to help you, and if not we might be able to point you in the right direction. Well done you for finding us.
Tace x
|
|
|
hello
May 2, 2007 9:05:29 GMT
Post by max on May 2, 2007 9:05:29 GMT
Hi again - great to hear back from you but sorry that the scan of your precious baby is showing potential issues. Are you due anymore tests? I wouldn't want an amnio either - very scary. As Daniella said Downs is definately not the end opf the world! My little boy may have an extra chromasome but he's not even counted as having "special needs" yet as he has no problems at all - apart from a bit of a cold and a liking for waking up at 5 am at the moment!!! I don't even notice, to tell the truth - neither does anyone else. He's just such good fun! Do keep us up to date. xxxx
|
|
|
hello
May 2, 2007 14:31:14 GMT
Post by danielle on May 2, 2007 14:31:14 GMT
HELLO AGAIN. I WANTED TO SAY THANKYOU TO EVERONE. DANIELLA--- THAT WOULD BE LOVELY, WE ARE BEING SEEN NEXT ON 24TH MAY AT THE UNI HOSPITAL. FREDDIE IS DUE 29TH AUG. CAN I ASK EVERONE, HOW DID YOU EXPLAIN TO YOUR OTHER CHILDREN? AND HOW DID THEY TAKE IT? I DONT WANT TO SCARE THEM BY TELLING THEM THERE BROTHER ISNT WELL ETC. ALSO, TO ALL WHO DID NOT FIND OUT UNTILL AFTER THE BIRTH, WHY DOES IT TAKE A WEEK TO DIAGNOSE? CAN THE HOSPITAL TELL AT THE TIME OF BIRTH? THANK YOU. SORRY IF MY QUESTIONS SOUND A BIT STRANGE. DANIELLE AND TERRY. XXXX
|
|
|
hello
May 2, 2007 14:58:41 GMT
Post by njcorbett on May 2, 2007 14:58:41 GMT
Ryan was older (13) when we had Lucy so he understood most of what was going on. To be honest it was my Mum who had the hard job because she had Ryan and we were 21/2 hours away in Glasgow for the first 5 days. I just told him we were lucky because we had a special little girl who would always want loads of cuddles. He moans about her now because she is into everything and won't leave his stuff alone. Just like any other brother and sister!!
|
|
|
hello
May 2, 2007 16:31:16 GMT
Post by tina79 on May 2, 2007 16:31:16 GMT
Hi Danielle,
Brodie's step brother was just coming up to 7 when Brodie was born. We told him that Brodie had downs syndrome but didn't really go into too much detail about it at the time, we just said that it meant that he might need a little bit of extra help with things as he grew up and to him Brodie's always just been his little brother. I think its best just to take your lead from the kids, and at the end of the day if they've got any questions they they'll probably just ask.
I think how quickly it is diagnosed after the birth depends on the individual children, they had a suspision that Brodie may have had downs about 7 or 8 hrs after he was born as he wasn't feeding, was sleepy and very "floppy". They took him to the special care unit and found he had a heart murmer which again pointed to downs, so they decied to do the blood test to find out and the results took about 3 or 4 days to come back. Some children don't have any problems at birth and its not picked up till months later when they don't reach certain milestones as quickly as other children.
Hope this helps, speak to you soon x x
P.S Love the name Freddie!
|
|
|
hello
May 2, 2007 17:26:28 GMT
Post by danielle on May 2, 2007 17:26:28 GMT
James is 7 and Clara is 5. To be honest, i think iam just worring about everything. And i dont want them to worry. To me, Aug is a very long time to wait, but the amnio was never an option, with the risks of miscarriage- i would never forgive myself. All we can do now is wait. and be monitered. TINA79-- do you know the sex of yours? and how is the pregnancy going? xxx
|
|
|
hello
May 2, 2007 19:40:27 GMT
Post by lizzymd² on May 2, 2007 19:40:27 GMT
Hello
Well Alex was 11 at the time so it was easier to explain to him and he understood better.
It only took a day for our results to come back, they suspected due to Camerons eyes and floppyness but that wasn't until 2 days after birth when he was in special baby unit due to jaundice where senior paeds are:-
There are lots of markers they look for
Prenatal
Lack of movements poor growth towards the end nuchal fold heart Postnatal
floppyness - due to poor muscle tone slanty eyes webbed feet/toes single crease across the palm/s
|
|
|
hello
May 2, 2007 20:23:45 GMT
Post by Tace on May 2, 2007 20:23:45 GMT
Hi, we got our results much quicker than that, but I suppose it would depend on your hospital. Our little girl Freya was only 19 months when Leo was born so there was nothing to explain at the time, Freya knows that Leo has downs but its the same to her as Leo has blue eyes, we did buy a really good book though and bought a copy for my sisters kids who are 4, 7 and 10. www.amazon.co.uk/exec/obidos/ASIN/0920303315/202-5983845-5703021Its called "Our Brother Has Down's Syndrome" and its got a really basic description of what downs is, we have just loaned it to our friends to read to her son (6) who had asked her what downs was. But I do agree that they will follow your lead, positivity breeds positivity in my book. HTH T x
|
|
|
hello
May 2, 2007 21:01:01 GMT
Post by claireyd22 on May 2, 2007 21:01:01 GMT
Hi again, firstly I wanted to say I love the name you've chosen for your little boy. My daughter was 6 1/2 when George was born and as he was in Neo natal unit for the first 12 days we just told her that it was because he wasn't feeding and didn't mention the ds. Partly because we hadn't got our heads round it but also because she was away from us and I knew she would worry. The first w,end that we were all at home we told her that George had what they call a condition and it was called Downs Syndrome, we said he wasn't poorly it would just mean he would be a bit slower to learn everything but he would be able to do everything if we gave him lots of help. Her reply was 'he's still the cutest brother' and that was it really, she loves him to bits and enjoys going to any meetings that we have with the support group. She also likes watching 'Something Special' on cbeebies and always calls me in if theres a little one on there with ds. I'm sure your 2 kids will be just the same with Freddie when he comes along. Its obvious that you already love him and they will just follow suit. About the blood tests taking up to a week though, we had the blood taken on the monday and they came back on wednesday, although deep down we already new anyway as the signs were there. Sorry this is a really long post but once I get started........ Hope that helps you, take care xx
|
|
|
hello
May 2, 2007 22:26:35 GMT
Post by pinkshell1110 on May 2, 2007 22:26:35 GMT
hi danielle as most people have said just go with the flow this was my concern with charlie as his brothers and sisters were 12,14,16 and 18 they were all fantastic and just said he hasn't changed overnight just because of a blood test and we didn't find out till charlie was 8 weeks old and as we said you dont just stop lovin them overnight because of these results,our bloods were taken on friday and came back wednesday.Kids are so surprisin when it comes to matters like this.We just said to ours that charlie will need a little extra help with most things, and that was all they wanted to know, you sound like fantastic lovin special parents and i am sure Freddie will be loved so much no matter what by all of you xxxxxxxxxx
|
|
|
hello
May 3, 2007 15:44:49 GMT
Post by max on May 3, 2007 15:44:49 GMT
Our results took 2 weeks to come back as Caleb didn't have the "physical signs" he has normal palms and wasn't floppy etc etc. They had to take blood and "grow" the chromasomes. Infact there is still talk of doing more tests to see if he is mozaic - I'm not really bothered as it doesn't make much difference! I think the length of time is different depending on where you live! I'm afraid i don't have any other children yet. Will the doctors do blood tests automatically on your new baby?
Freddie is such a sweet name!
|
|
|
hello
May 3, 2007 18:00:08 GMT
Post by Rilith on May 3, 2007 18:00:08 GMT
Hello and Welcome to UpforDowns Hunni We had high measurement on the nuchal with holly, hers was 4mm at 10/11 weeks. It is a rollercoaster of emotions but it sounds as though you have pretty much made up your minds that Freddie will be loved no matter what. I think Freddie is a very lucky baby to have wonderful parents like yourselves. Deffo take Danni and Adam up on the offer of meeting lil Josh. I am dying to meet hime one day and can't wait to kiss him all over (Josh I mean not Adam... LOL) As for telling the other children. Mine were 7 & 4 at the time. The 7 year old we told him that the new baby might not learn things as fast as other babies and that s/he would need extra special help from her big brothers. He has taken on the roll of teacher... tee hee. The 4 year old we just told him similar but in simpler terms. We also had to tell them that the baby had a poorly heart and would need operations to make her all better. They have both been really brilliant with Holly and love her to bits. They get anxious around operation times but are really strong for all of us. They have taken everything in their stride and I feel have become more enriched little people for going through what they have Wishing you all the best of luck with the scans. And if you do happen to have a baby with Downs you will have a ready made support network here. And if everything turns out OK and baby is fine you better make sure you come and visit and let us know how you get on ;D
|
|
|
hello
May 3, 2007 19:49:06 GMT
Post by danielle on May 3, 2007 19:49:06 GMT
rilith-- hi can i have some more info from you if its ok. what happened through your pregnancy with holly after your first scan? did you have the amnio? or were you monitered? how did all your other scans go? thank you danielle. x
|
|
|
hello
May 4, 2007 13:55:10 GMT
Post by Rilith on May 4, 2007 13:55:10 GMT
The pregnancy itself was boring... LOL we had no maternal complications. She was a little on the small side though. We did have the amnio. As I said earlier we have the two older boys so just needed to know more in preparation of that any "decision" making ITGWIM. They looked after us very well when it came to scans and monitoring. The info they gave us was a bit.. well... Poor. I found more info researching it myself on the net. Once we had the 20 week scan and they did a very detailed check of the heart, when they discovered the heart defects we had fortnighly scans from then on. One was in Birmingham (About 1 hours drive from where we are) to check the heart, and one was at our local hospital to check growth. The growth did very well until the last one we had at 37 weeks. She hadn't grown much at all. Thats why they induced the labour. She was very well after it TBH, she stayed with me on the ward and held her colour well. She had heart scans before leaving the hospital My full story is in "Riliths Therapy" section. The 1st few sections would be more helpful to you. Try not to worry about the latter sections though, that was a different ball game completely.
|
|
|
hello
May 8, 2007 21:32:27 GMT
Post by tina79 on May 8, 2007 21:32:27 GMT
Hi Danielle, hope you're all doing ok.
Pregnancy is going ok at the moment thanks but we don't know what sex we're having yet, after a lot of debate we decided to wait until the birth. We did find out that we're having twins though which came as a bit of a shock to us. We haven't had any tests done with this pregnancy other than a nuchal scan at 11 weeks which showed 1.1mm for one baby and 1.2mm for the other but as we had no tests at all with Brodie we've got nothing to compare it to, we were offered an amino if we wanted further tests but like yourselves we decided against it, what will be will be.
Let us know how you get on at your next appointment, you never know we could end up having our babies on the same day! lol
Take it easy x x
|
|
|
hello
May 12, 2007 11:50:00 GMT
Post by odiness on May 12, 2007 11:50:00 GMT
Hi Danielle and Terry
I am in a similar situation as yourselves altho I did have the amnio and the results came back as positive for Downs. You can check out my full story on the Welcome Odiness thread. I am at the stage of waiting for a more indepth scan at the specialist scan unit to see whether any major health complications can be detected. At the moment I am certain that I want to continue with my pregnancy and have my little girl but of course, as with any mother, I really hate the thought that she may suffer and go through lots of trauma at a very young age, therefore, my scan next week is my final hurdle if you like and fingers crossed, if she is as much a fighter as I expect her to be, then I will be holding my beautiful Jasmine in about 4 to 5 months time. Hope all goes ok for you as I do know what an emotional and worrying time you are going through. The only advice I can give is to follow your heart. Take care, Lucy xxx
|
|