Something wrong-UPDATE

Again, thank you all so much. I would like to get some more info of those of you that have known people in this position and those that know people with downs and have offered support. Im going to leave it a little while first- so if you get an email of me in a week or 2 time, remember its me! 8-[

Im glad you all like the name Abby (Abbey, Abbie- undecided!)

Well, today was a great day. Not for the reasons you are hoping for tho.

I spent the day with my mum and dad and sister and her kids. I told them of my decision to keep our little one (what decision!?) and they were all so happy and glad that she is here to stay. From what they have said, the hardest thing out of all this was not the downs, it was the thought that they might have to say goodbye to her soo soon when they all lover her so much. They didnt want to loose her just as much as we didnt.

I went to my appointment and waited forever. It was hard waiting. Id been a bit frail all day and the wait didnt help. They took me and put me on a bed, and then discussed the test with me, what it would find, how its done, what i would feel and the risks. Mum and Tim were with me and we were all asked if we had any questions. I had heaps! What are the chances of something happening to her, what if she moves into where the needle is, what will i feel, is there some other way we can get a true result.

Apparently at this stage this isnt any more options as the readings as to the size of that neck thing cant really be relied on at this stage. I was told it should have been done at 11-13 weeks- we werent offered, but thats much and much now.

I was scared, mum and tim were scared and my little star was moving all over the place as usual.

I got wheeled into the ultrasound room, asked some more questions-

Explain why we are at a high risk- the neck thing ofcourse

Can we chicken out today and have it another day- yes and no- yes someone would do it, but the ladies (ultrasound tecs) didnt know if the risk increased, and there is a cut off time for "doing something about it" which wasnt an issue to us as we had made our decision but it was an issue for the specialist as he wasnt willing to do it if we werent going to change our mind based on the result.

Any other scans we can have- yes- but whats the point as they wont give a reall 100% answer as the bigger she gets the harder it is to tell if shes just big or fat or if it is because of down- so no point

There were other questions, i asked the specialist to please go thru my last two scans with me as i still didnt know all the facts. He said that-
a) the neck thing is abnormal- could be downs, thats why i was offered the test
b) no other indications of anything wrong with her- but ultrasound wont always pick up everything.
c) he would not be happy to put the baby at risk if we were sure we wanted to keep her.
d)Stop looking at it like we had a child with a problem- im young and healthy, tim is healthy, she has only one indication (big one!) and what the doctor told me was wrong. The previous dr told me she has a 1 in 250 chance of having it, this specialist told me it was closer to 1 in 400.

So, we didnt have the test- how could we? If something had happened to her as a result of it, we would feel like we had done it to her, just like if we had the termination. We werent going to risk her for my benefit only.

We were all happy that we werent getting it done. Its just too freaky. It wasnt going to change the way we feel about her. We are being realistic and are going to think of it as her having downs, if by some stroke of luck she is fine- well that would be a nice suprise, but we need to prepare for her as a child with downs.

anyway, thats what happened today.

Thanks again for all your kind words. I really cant explain how it makes me feel. xxxxxxxxxxxxx

Emma

I'm so glad you had a better day and you got some answers from the Doc who saw you today.

Good on you for making a stand on your decision (with the specialist). And with what you said about your two previous scans, it looks like her little heart (and everything else) is functioning well.

I didn't mention this in my previous post, but I, too, was "strongly advised" by the specialists to terminate my son at 21 weeks, as the left side of his heart hadn't developed (the full story is in the birth stories section of the forums and his name is Zeke if you want more info).

We, too, went against almost every medical opinion we were given and didn't terminate him. Today he's a happy three year old.

I hope the peace that you have about your decision increases every day :D

Emma huge hugs to you on your decision. Your little girl will be loved no matter what the outcome is & that is the most wonderful thing in the world. I love the name you have picked for your little girl, Abby is just adorable however you choose to spell it.

Emma - good on you for your decision! You are an amazing woman with a beautiful girl you will meet in a few months!! good on you!

I can't wait to meet gorgeous little Abby - she's very lucky to have you both.
:D

Excellent news Emma :) You sound confident about what you're doing and it's lovely to see. Keep in mind that people have been given those odds or worse at the 12 week NT scan, many only to find that there's nothing wrong, so Abby still has a 399/400 chance of being just fine!! She's alive and well, and is loved very much. What more can she want :)

I'll be looking forward to following the rest of your pregnancy *hug* <-- that's a happy hug this time! not a comfort hug! :D

emma - wanting to pass on that you and your family are in mine and hubbys prayers. your little abby will be gorgeous and such a blessing no matter what! remember there are many people sending love and praying for you.

Hi Emz, I sat here for ages trying to work out what to say to you, but nothing would come out right and express the emotions i have felt for you and DH, to tell you how much strength you have shown over the last few days and the commitment you have shown/made to Abby (as you said though her little kicks and punches wouldn't let you decide any other way). You and DH are a credit to yourselves and to little Abby =D>

I look forward to continuing this pg journey with you, and on behalf of all of the March mums and bubs i am sending you a HUGE group hug :grouphug: .

Take care and give Abby a belly rub for me. PS - I love the name you have chosen for her

Hi Emz,
So happy that you and your partner were able to make an informed decision.
I wish you, your partner and Abbey a healthy pregnancy and a beautiful birth.
Lots and lots of love
Deb

Aww Emz, so sorry you have had to go through all of this drama. Little Abbey has got a great set of parents & a fantastic family who love & adore her already. I think that is going to be worth so much to her.

I pray that your pregnancy continues on without any more stress so you & Tim can enjoy it. And you never know, miracles can happen.

:hug:

Hi Emma

Glad to hear the update from the specialist. Like a couple of the other girls have said, some people get those odds at the 12 wk scan and chose not to have the amnio as well. There is more chance she is just fine than anything is wrong. Plus, like your specialist said, it would have been more likely to be picked up at that stage than this.

Emma, so much can go wrong during pg and childbirth that I'm sure some forewarning that there may be a problem will only help to prepare you to accept your little girl however she is. None of us know what will happen in the future to any of our children - some are born fine and still have problems later from other things.

I have a lovely friend who tells us that the Japanese deliberately put a small blemish on all pottery they make because nothing is meant to be perfect. We're all like Japanese pottery in some way!

Hello everyone!

Today is a great day!!

I called the ob to tell him that we didnt have the test and to ask a couple of quick questions.

He told me that he knew already and that he has spoken to the specialist in melb to get an accurate "number" on our chances for Abby to have Downs.

Taking everything into account the possibility is LESS THAN 0.5%

How can i not be happy with that!

I know it dosent mean that its not going to happen, so dont you all stress out thinking im going to forget all about it and get a shock if it turns out she does have this little "problem" but...

Ive started to look into some info too and thats helping me understand what it will be like...

less than 0.5%! come on thats not too bad hey?

We already know that we love her very much either way so what harm can a little hope have? At very least its going to help me get thru the next 17 or so weeks.

Anyway, Im off to have lunch with Tim and my sister... and do some shopping for our little star.

Thanks everyone, im so thankful to you all for helping me get thru this. When ive been sad i just read all the posts and it really honestly does help.
xxxx emma, tim and abby!!

Emma,

I've just discovered this thread and read every single post.

My love and hugs to you, Tim and little Abby.

You're an amazing family.
xx

Wow Emma

The odds given to you by the doc's are great - I'm so very pleased for you, it must be somewhat of a relief.

I'll continue to pray for you and your little family anyway - you can never have too much help - miracles happen for a reason [-o<

Good luck and stay healthy for the rest of your pregnancy

dianna :hug:

Wow Emma! More good news for you three. :D

Emma that really is great news - those are fantastic odds! :D

Emz - what fantastic news!!!

Hugs for you & your family!

PS: Rub your belly and tell little Abbey that we all here think she is an amazing little star!!

Nes

That's so wonderful Emz! Enjoy your shopping... buy something for yourself too!! ;)

That's fantastic news Emma. Less than 0.5%, that's great. You are so strong to be coping as well as you are. Enjoy the rest of your pregnancy.

Emma - i have been reading through - you have a lot of support here on Beelybelly - everyone is behind you 100% - you are a very lovel woman and your daughter will grow to be a beautiful and precious and much loved wee girl no matter what the outcome- I am so happy that you have come to terms with it and the risk level has been reduced... good luck and look forward to watching your progress....

What great news. Hope you are out buying plenty of little pink outfits for Abby.
Spoil yourself and DH too, you both deserve it. You've been incrediably strong.
Take Care. :)

That is wondeful news Emma.

Have fun shopping today.

Good news Emz, It sounds like this has given you that extra boost to keep going, and reaffirms your choices. Less than 0.05% sounds great. I will keep you and Tim and of course little Abby in my prayers.

I hope you had a great lunch and spoilt all three of you on your shopping trip.

Take care Kas :D

Oh Emz thats such fantastic news!!!!!!!!

Hi Emz! I don't even know you, but I am so proud of you!

If you want to e-mail me, I'm here any time. My first degree is in Special Ed, and have worked in the disability sector for 8 years, mostly with children and adults with disabilities (many with Downs) and their families, (outside the school system). I am currently studying Law to become a specialist in antidiscrimination and human rights law (just to give you an idea of how passionate I am about this!) I have worked with government and various advocacy organisations to try to change attitudes in the community toward disability, and make sure people with a disability are given every opportunity to become valued, contributing citizens. I can put you in touch with some people in your state if you're keen to talk with someone personally.

Despite my work, I am really just an everyday person with a passion for human rights, and helping people with a disability to acheive their potential.

The odds are definately in your favour though, and you may not even need any info at all!

Abby is such a lucky little girl!

everyones prayers are paying off and i am sure they will continue for the rest of your pregnancy!!!

What wonderful news!!! That's just great Emz!

I hope you've had a fantastic day, buying up special goodies for that special pink bundle, Abby!

That is excellent news Emma! Hope you had a good day shopping.

That is wonderfully encouraging news for your precious little girl, Abby.

Hope you had a great day shopping & had some fun for a little while.

Emz - I'm by no means a religious person but still believe that curveballs are only thrown at those who can cope with them. So all my love to you, Tim and your precious pink Abby! You guys rock..!

What a week you have had.

Wishing you a healthy remaining pregnancy.

You and your family are an inspiration O:)

Em, huni, you and I have been sending each other emails, so Im updated with Abby's progress.

But I just wanted you and everybody else to know of the AMAZING strenght and courage you and Tim are showing, you're both just fantastic parents already and Im sure-no positive that you're going to be just a family that's truly blessed and happy.

Abby doesn't know how lucky she is too have you both.

All my love Nard xx O:)

Em - 0.5% Is great- I hope that you sit back and enjoy the rest of your pregnancy and as you said you still know what is happening!

love
Jacci

Emma,
Thank you so much for sharing your experience with us all.

My partner and I decided not to have the 12 week scan, as we had decided prior to falling pg that we would keep a baby with Downs - so like you... what is the point of having tests? (I do need to have the 19 week test or they will not admit me to the Birthing Centre - but it is to see if I can have a natural birth, not for Downs)

You mentioned that you were not offered the test at 12 weeks, I think those who are offered this test at 12 weeks or at any time, first need to know what they would do should the test be Positive. What are they willing to do. If they know they will terminate, that is fine, but if they are sure that they would not terminate, then don't have the test (unless you want to be "prepared" for a child with Downs?).

Your story has affirmed everything I have believed in (which has been frowned upon by my friends) - so thank you again so much for sharing... I understand that this has been an incredably difficult time for you... I hope you enjoy the rest of your pregnacy and have a beautiful, happy, healthy baby.

Cee-Cee-

Thanks for you kind words. If i had have been offered the 12 week test i would have taken it- this shows how selfish I am, because as far as i know its just a ultrasound where they measure some things- I would have done anything to see my little one a bit earlier.

Ofcourse i feel differently about additional ultrasounds and tests now. And anyway, me, Tim and my family wouldnt have felt any different had we have been told at any stage of the pregnancy. As far as we were concerned she was already here with us the moment we conceived so there was no letting go.

Thanks everyone else for your warm wishes and your [-o< 's for our little one. Shes just so wonderful! I cant wait to show her off to everyone when she arrives!! sooooooo long to go!!! :bellyrub:

Em - glad you are doing much better now.

CeeCee - the 12 wk u/s we had wasn't just to determine chromosonal abnormalities, but also for a host of other things. Completely agree with you making your own choice on finding out about disabilities or problems, and we were sat down by an ob at the u/s clinic who fully explained the risks of any further testing, etc, etc. They went out of their way to tell us that the u/s was in no way intended to diagnose all problems.

At our u/s, they also looked at my ovaries, cervix (make sure it's all closed properly), position of fetus (and made sure there was only one!) and placenta (in our case mine is low, so they warned me I would need watching for that and may experience some spotting). They could also make sure I didn't have any fibroids, which can cause problems, or cysts. They checked that the umbilical cord was functioning properly, with two arteries, and I'm not even sure what everything else was for! You don't have to have the NT scan for Downs (that's just a measurement of the back of the neck) as this is only really accurate when combined with a blood test, or maybe you could just tell them that you aren't interested in knowing if the baby has any deformities? In any case, even if they suspect abnormalities, further testing is required if you wanted them to be conclusive, and they certainly don't push that given the chance of miscarriage.

As for the u/s, the blood test was also taken to determine a whole range of things, not just for abnormalities. Tests can help you plan a healthy pg if there is anything you should be concerned about for yourself, not just the baby, but of course whatever you decide - I hope you have a great pg!!!

CeeCee - we didn't have the 12w NT scan either, as we are the same, we would never terminate regardless. But the OB still did his own scan which had some measurements and things in it to make sure bubs is growing properly etc. (The OB did have a quick look himself at the neckfold and said it looked ok to him.. so i'm hoping he's right!)

I was happy to have the 19w scan as I think it's important to know whether the baby is healthy or may require treatment when born etc. You'll enjoy seeing bubs too. In fact I saw the scan more as getting a look at bubs than looking to make sure its ok :)

Hope the rest of your pg goes smoothly!

Emz that is great to hear little Abby has only a.05% chance Im sure our prayers will help and you will end up with a beautiful healthy bubba!

Hi Emz,

we informed our OBGYN that we do not want anymore scans or tests that we will take this little fella the way he was sent to us.

But we did make one decision, to have a C-section to make the least possible stress on him and that his head will probably be really too big for me anyway and if he does get into distress he could have a lot more serious problems.

So that said thats the only thing that I really have relented on and we have really started to bond with him already so like you guys keep up the good work and may god bless you guys with a healthy little girl.

Lindie

Hey everyone

Just thought id give you all an update-

For a start, ive got pelvic instability! Yay, something else to feel down about. While i was in getting that checked out i told the ob of my concerns as to how soon after birth they would be able to tell me if Abby has it or not. She said they would most likley have a pediatrician at the birth to check her over but we might not know for a few days at least if its not obvious. Thats pretty scary news as i just want this to be all over and done with asap so i can get on with everything, one way or the other.

Not coping to well- Im happy and positive most of the day, but at least once a day im having a bit of a melt down and i just wish i knew how i could stop doing this as its making life very hard.

Was at mums yesterday- she told me that i need to stop worrying about it. I asked her to tell me how. My sister is 22 and just had her tonsils out last week and mum looked like she was going to have a heart attack she was so worried- so if she feels that way over a minor thing like that, how in the world does she expect me to forget all about this and stop stressing about my little one? I know she just wants me to be happy (and i am most of the time) but surely she knows im going to stress about it from time to time.

Anyway- when we went to have the amnio done, the specialist said he would look at our scans again and write up another report. I have an app with my GP to find out what he has put in the report. (maybe he will say it was all a bit mistake..... hmm probably not!) I think this is the better way to do it as there never seems to be enough time when i see the ob/midwife. Also going to get some info on the pelvic instability thing as i cant get into the hospital physio for at least 2 weeks- grrr how am i going to last 2 weeks!! I spose its going to last till months after bubby is born so id better get use to it. Im very thankful that while it hurts, it has no effect on Abby.

Other than that, my belly is getting bigger, Abby's kicks are getting stronger and her room is getting fuller!!!! (lots of shopping in the last week) Apart from this stress, i love being pregnant, she is such a wonderful little friend and i cant wait to meet her. :hbeat:

Oh! im 23 weeks today! yayyyyyyyy!!!!