Thankyou, Trishalishous! So glad to hear your little one is doing fantastically! One thing that has concerned me throughout this time has been the inaccuracy of medical testing/screening. I read of a lady who had a DS risk of 1:7296 and she gave birth to a beautiful bub with DS. Luckily, my GP is great and has been honest about the frequency of medical boo-boos... ie why they don't allow women to act on FISH results from CVS.
I have vowed to avoid such screening tests 'next time', as all this has done is brought unnecessary stress on us, all because of a ratio.
Congratulations to you for sticking it to that silly ratio and powering on!
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05-04-2011 06:35 #11Oven
- Join Date
- Nov 2010
05-04-2011 08:53 #12
Hi Ollylu, sorry to hear you are also travelling this rollercoaster, but like daisymae, you seem to have a fabulous attitute. It's great to see. I am hoping for both of you that your babies don't have Down syndrome, because I know it's something which most people wouldn't choose, but I'm so glad to see that if they do, it's not the end of the world for either of you.
daisymae, I am also a big fan of Kelle Hampton; she has done alot as far as raising awareness about Ds, and showing people how beautiful a baby with Ds can be. I reckon I went through several boxes of tissues the first time I read Nella's birth story. Many times I've read that blog and thought "Yeah, that's exactly what I wanted to say!". She has a lovely way with words.
Another website you might like to look at is http://www.dsdownunder.com.au/forum.php (I hope it's OK for me to post a link to another forum here - it's a Ds specific one, so not competition to Bub Hub.)
just ran it home to me how ridiculous one dr's statement to me was: "You're under 35, why did you even have this testing done????". As I 'explained' to him with a scoff of disbelief, it is such a misconception that only women over 35 are ones at risk of Tri21 probs!! The fact of the matter is that women between 18 and 34 have the most babies, therefore we have the most babies with DS! Argh, the medical profession!
Although I had that little hint at my 20-week scan, I never seriously thought my Supergirl might have Ds - thinking about looking at her once she was born was more a "ruling out" kind of thing, if you know what I mean. I have always been really grateful that we didn't know while I was pregnant. I think the sadness I felt after we received the diagnosis was lessened, because she was right in front of me, and it was impossible not to see how gorgeous she was. Also because I was distracted by the enormous job of caring for a newborn, I couldn't spend alot of time thinking about how awful this was. I think this is the same kind of thing which you talk about here:
I have just been so proud lately that I haven't really had the time or energy to be 'concerned' about chromosomal issues.
Anyway, I'm rambling on a bit (I do that!). I'll shut up now. Am looking forward to seeing updates. You are in my thoughts.
04-05-2011 22:01 #13
Thank you so much for starting this thread.
I had my amnio yesterday after getting a 1:12 DS risk result after the NF scan.
After I had the NF scan I thought my world had come to an end and I cried for 4 days straight. I kept scanning this site hoping for an answer and all I kept finding was other women stressing out about 1:2000 results and similar and it just made me so angry and frustrated. Then someone sent me the link to Kelle Hampton's site and I have to say without any exaggeration that this site changed my life and my mind.
By the time I got my referral to the top Ob in my area I had already made up my mind that no matter what I would go ahead with the pregnancy. He (and a number of other med. professionals) told me the NF scans cannot be relied upon because its just a numbers game and not indicative of personal factors. Even though he recommended an amnio to find out once and for all I kind of felt that it was a waste of time because it wouldnt change my mind. I get my results on Friday but I'm more excited about confirming the sex of the baby than any other results. All I care about is that the heart is beating and that there is a brain.
Every time a doubt starts to creep in I read posts by the handful of supportive, understanding women on this site and it gives me hope and strength. Perhaps if our voices get louder there'll be less of a histeria about DS and clear up the misconceptions about DS, the people who have it and the people who embrace it.
04-05-2011 22:08 #14
Can I just ask, what is an Early Intervention group? We've already decided that the outcome of our amnio results (on Friday) are irrelevant but should they come back with a positive DS result I want to be as prepared as I can so that my baby can have every opportunity available to her.
06-05-2011 12:31 #15
Re the EI group, this works differently in each state, and I think here in SA is fairly unique. For us, the Down Syndrome Society SA offers an Early Intervention group which runs once a fortnight, with school terms. They do all sorts of activities, focussing on motor skills, communication (spoken and sign), interacting with the other kids. They can do that group until they're three, then they go to a pre-kindy group.
But as I said, it's different in all the states, so I would really urge you to contact the Ds Association/Society in your state, if your test results do come back positive for Ds, of course!
daisymae and ollylu, how are you girls going? I have been thinking of you
06-05-2011 15:54 #16
My Ob rang me this morning with a positive DS result so now I'm just trying to process it. I went to the library and got heaps of books and I'm waiting for the lady from the local DS support group to ring me back but its all good in theory, the reality hasnt quite set in yet. Or perhaps it has and I'm just trying to ignore it. A big part of me wishes I never had the NT scan to start with but I guess the practicality is that at least we are (somewhat) prepared for our little girl when she comes. I am so thankful for the Kelle Hampton website, it literally changed not only my mind but my life. I'm trying to tell myself I'm part of a special little club now, so now I'm just hoping to meet other members of the same club.
12-06-2011 13:32 #17Oven
- Join Date
- Nov 2010
girls, i am so sorry i havent been around. we moved two times within the space of a couple of months and df has been away with his army man work. i cancelled our internet and am now relying on mobile for contact with the outside world. ha. what a technowhizz. i hope you are all well! i'm 35 and a half weeks! HUGE! things have been going well; head down since 29 weeks and all ready to go. working til 37 weeks and doing the last minute dance to get everything ready (panic).
i am feeling so much more positive! we have had two growth scans (24 and 32 weeks) and baby is MEDIOCRE! which is what we were hoping for! my low papp-a seems to be a non-issue now, as my cervix is holding well (excellent haha). the genetic counsellors we saw at so+gi here in bris were great (one was, the other was eh). we are still hearing the spiel about 88 'healthy' babies in our risk. i could punch someone. we ended up deciding against an amnio at 34 weeks, as we are so close now, it just doesnt matter like it used to. the drs are confused as to why as a mother i have prepared myself for a baby with T21. but upon ignoring their queries, i find myself comforted by the preparations we intend to make about sign language, potential trouble with feeding, floppiness and early intervention. and now i am just excited. i dont feel the 'disappointment' i did before (not the right word). i am so glad to have posted here to receive such wise advice from those who have been where we are currently. and changedmymind, i feel exactly the same... like part of a welcoming club. even though we are not sure what our outcome will be, we have felt welcomed and supported this whole way and we KNOW that T21 is not a sentence, but actually can be a blessing.
what beautiful children and adults i have met with T21! such loving, devoted, genuine people all of them have been. and with such integrity.
all of your children are beautiful and changedmymind, i felt the same way after reading about 1:800 results etc and felt angry and almost betrayed by the NT scan/bloods... but after all the stretch marks, the rolling over in my tum, getting kicked in the lungs (!!), playing cheeky games with my little one and watching him/her just take over my body, i know this baby has a cracker of a personality and i could not be less concerned with anger and regret about my choice to screen. one day you will wake up and i truly believe, your diagnosis will just be a part of your journey, but it wont hold that 'weight'. you'll just be so excited to meet and get to know that little one. it feels great and it is such a relief.
i spent the majority of this pg worrying and feeling angry and guilty about screening and felt like a failure. i guess you just hit a point where it doesnt bloody matter anymore cos youre going to have a gorgeous baby! might also be due to the lack of sleep and impending deliriousness, but im going with cute baby
sorry to get so deep and crazy. my preggie hormones finally kicked in and i do things like cry at the telly now
how is everyone else doing?!?!
14-06-2011 12:34 #18
What beautiful words daisymae.
Woooooh, you're so close now, how exciting!! I know your baby is going to bring you so much joy, no matter what it's chromosomal makeup, and it's a real delight to see that you also know that. Good luck, and can't wait to hear all the news!
15-06-2011 12:17 #19Oven
- Join Date
- Nov 2010
how's your little one, fox?
17-06-2011 09:00 #20
QUOTE=daisymae;5900915]how's your little one, fox?[/QUOTE]
Thanks for asking. She's pretty good, although we are having a few respiratory issues with her, where she looks good, is happy, and eating well, but sounds really bad. A really deep chesty cough, and rattly breathing. But we have a paed appointment next week, and I think he will refer to to a pulmonary specialist, so hopefully we can start finding an answer.
Overall though, she's really good. She will be 2 tomorrow, and I sat down and tallied her words yesterday, and came up with 14 words she can sign and 10 that she can say. Her latest word (signed and spoken) is STOP! She isn't walking yet, but is close. She is constantly impressing people, and challenging their perceptions of what a kid with Ds can do.
(Yes, I am a little bit proud of her!)
changedmymind, I have also been thinking of you. How are you getting along?
And ollylu and AlyshaM, did you girls get some results?
Last edited by Fox in Sox; 17-06-2011 at 09:25.
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