How many of you did down syndrome testing?

roxyttandme · June 2012

ashtonblair123:
I did not. My insurance does not cover "unnecessary" medical testing anyway but the only thing you can change about it by knowing it whether or not you terminate and I would not have done that. My risk factors are low in the first place. And without an actual diagnosis if the numbers came back high it would stress me out, and make me more nervous in the future about having anymore kids. I think for someone like me (who worries over EVERYTHING) it's better to just go without it.

:::shutters::::

BTW, there are no risk factor to Amniotic Band Syndrome or countless other Dx.

IAM3Bs · June 2012

roxyttandme:

Unless you have been in the shoes of someone like myself - YOU.HAVE.NO.CLUE!

I'm sorry to be so blunt, but the whole presumptuous ignorance of some of these posts makes me skin crawl? There are so many illnesses our there - you have no clue what could or couldn't happen. I know 4 women IRL that had prognosis's outside of Downs (two of which were what our daughter went through) during the NT scan and ended up terminating due to medical cause. TDMC is not about "aborting" the baby, throwing it away, or giving it up? It is a act of love, compassion and the most selfless act and ultimate sacrifice a parent can make.

As you might have picked up, we terminated. Not at 12 weeks however. We were well within our 23 week. Our daughter was Dx with Amniotic Band Syndrome at 23 weeks 3 days. We were give two options: A.) Terminate B.) Allow her to suffer (oh and BTW, due to how far along we were, we have 4 whole hours to decide) I say suffer b/c amniotic bands were wrapped around her body in countless locations. As she grew (from 9-10 weeks) the bands did not. In turn, they fillets her body open, disfigured and relocated bone, and amputated limbs. Our daughter suffered immeasurable. With each sway of the hip and kick of the foot, she was in agony. The fact that some of you point blank said: "I would never terminate" make me sick to my stomach. I get many of you were in the context of Downs -but many of you weren't. You can't imagine what is was like for us to know that the whole time our daughter suffered and we didn't do anything to stop it until 23 weeks. In fact, I had a PTSD dream about it Tuesday night. It still haunts me - almost 3 years later.

A.) you don't know what kind of prognosis that can occur - even at 12 weeks. Lord knows we NEVER expected anything such as what our daughter went through could ever even occur to any baby!

B.) Until you are faced with a situation like ours, you DO NOT know how you would react. Please stop pretending otherwise. It is insulting to us that had to make the worse decision we could possibly fathom. In the end, those of us who TDMC (and there is more of us that you would ever know as few of us actually speak up about it) sufficed our heart to SAVE our child from suffering. I would give my life in a minute to allow my daughter to have hers. Please don't pretend this isn't about love? cause it is the only thing it is about.

Sorry for the odd fond. I am at work and didn't feel comfortable typing all this with tb URL on my screen....

That is, without a doubt, one of the most terrible and sad things I have EVER heard. I had no idea such conditions even existed. I have always been in the "no way would I ever terminate" camp, but after reading that, and realizing now, that there are more issues than just potential genetic disorders, I have to say, that in your shoes, I probably would have made the same agonizing decision. I am so sorry for your loss, and that you had to even make that choice.

pb_bride · June 2012

Of course I did. Not only that I'll be 39 when I deliver (odds for DS for my age is 1:110), I also am a medical professional so I know there are LOTs more other problems/concerns they can detect in the screening test.

I had the integrated prenatal screen (NT + 1st tri b/w + 2nd tri b/w), as well as the MaterniT21 blood test. If any of them had come back abnormal, I would have opted for an amnio. Knowledge is power and if my LO were to be diagnosed with T13 or T18 (which is almost universally fatal), we would terminate as well.

StefandTodd · June 2012

roxyttandme:

Sending you love and hugs

I am so thrilled for you guys as you await the arrival of your second baby girl, and as always, so sorry for the loss of sweet Haleigh. Thank you for sharing your (and her) story so openly. She really does live on in the immense amount that you give back in her name!! Hugs.

[Deleted User] · June 2012

The user and all related content has been deleted.

LuckyLavender10 · June 2012

amy052006:

Not to mention, too many people (apparently purposely misinformed by their doctors) think the test is only for "downs" so of course they would never terminate because "people with downs have have great lives" and "OMG the cute kid in the Nordstrom ad"!

Yeah, except it also tests for T18. Which means your baby will most likely be stillborn or die a painful, horrible death shortly after birth.

People forget that pregnancy and child birth both can occassionally be fatal. I have a kid and husband that need me, and am not going to risk my life (and lord knows what type of mental agaony or illness) carrying a child to term that will not live.

But again, you only know this if your medical professionals educate you on the topic and all of the risks.

Not all babies with Tri18 die. This is exactly why I wouldn't terminate no matter what the tests showed.

https://noraroseyusko.com/

roxyttandme · June 2012

StefandTodd:
roxyttandme:

Sending you love and hugs

I am so thrilled for you guys as you await the arrival of your second baby girl, and as always, so sorry for the loss of sweet Haleigh. Thank you for sharing your (and her) story so openly. She really does live on in the immense amount that you give back in her name!! Hugs.

OMG! S, you are pg again!!!! Holy crap! I won't say anything in fb, as I haven't seen any announments on your end. Congrats!!!! How are you feeling???!!!

Really happy for you! You two make dang cute babies!!!

hmontty · June 2012

We're doing it/did it.

If the odds come back scary, we will do the maternit21 blood test for definitive results. If there is a chromosomal problem, we will decide whether to terminate. If we decide not to terminate, then at least we can educate and prepare ourselves for what's to come.

nealbl · June 2012

kategw:
apegg23:
nealbl:

Not me.

A) I would never terminate due to something like this

I really don't need something else to worry and stress about

C) It just gives you probabilities. I am a person the needs definitive answers and I don't like proablilities.

Exactly this. After you find out, you can't prevent any of it.

Ok, but you can educate and prepare yourself. There are additional tests they can perform to determine conclusively depending on the results.

I have no issues with the test and I have no issues with who gets them and who doesn't. This is just my personal for myself view. It was not meant as a way to say others shouldn't do it. It was just saying why I didn't do it.

TaylorP5 · June 2012

They said the same thing to me and I almost didn't do it but I ended up doing it and all is well so it doesn't hurt to do it. It's completely up to you.

WiscoMom67 · June 2012

LuckyLavender10:
amy052006:

Not to mention, too many people (apparently purposely misinformed by their doctors) think the test is only for "downs" so of course they would never terminate because "people with downs have have great lives" and "OMG the cute kid in the Nordstrom ad"!

Yeah, except it also tests for T18. Which means your baby will most likely be stillborn or die a painful, horrible death shortly after birth.

People forget that pregnancy and child birth both can occassionally be fatal. I have a kid and husband that need me, and am not going to risk my life (and lord knows what type of mental agaony or illness) carrying a child to term that will not live.

But again, you only know this if your medical professionals educate you on the topic and all of the risks.

Not all babies with Tri18 die. This is exactly why I wouldn't terminate no matter what the tests showed.

https://noraroseyusko.com/

from PubMed:

Expectations (prognosis)

Half of infants with this condition do not survive beyond the first week of life. Some children have survived to the teenage years, but with serious medical and developmental problems.

From Trisomy 18 Foundation:

"50% of babies who are carried to term will be stillborn..." and "less than 10 percent survive to their first birthdays."

--------

So you're right... Not all of them die RIGHT AWAY... Some are allowed to live incredibly painful, highly-medically-managed, very short lives.

I would endure the pain of ending a pregnancy to save a child from this kind of life. I wouldn't wish that pain and suffering on anyone, and certainly not a child.

Heatherhah · June 2012

I had the testing with all 3 of my recent pregnancies. I did it to be aware of the situation if iyt were to prove that oiur babies had it. I am also 39 and was 35 with my first DD so the recommend it for my age.

I would never terminate EVER. I lost my last DD at 38 wks 4 days with no real reason she was healthy . So we want to be prepared and know what our future will hold whether our babies are healthy or not. Plus it doesn't hurt to have anpther u/s to see the baby.

roxyttandme · June 2012

Heatherhah:
I had the testing with all 3 of my recent pregnancies. I did it to be aware of the situation if iyt were to prove that oiur babies had it. I am also 39 and was 35 with my first DD so the recommend it for my age.

I would never terminate EVER. I lost my last DD at 38 wks 4 days with no real reason she was healthy . So we want to be prepared and know what our future will hold whether our babies are healthy or not. Plus it doesn't hurt to have anpther u/s to see the baby.

I never thought I would TDMC either... until my babies body was being ripped to shreds while she was alive inside me. You may think you know what you would or wouldnt do in that kind of situation.... but trust someone that has been there.... YOU. HAVE.NO.CLUE! To say otherwise is insulting to people like myself.

starfish717 · June 2012

BeckyFedora:
We did the NT scan at our 12 week ultrasound. It seemed routine from what my OB told me. I'm a first time mom with no reason to worry, but I figured it was better safe than sorry!

This exactly.

discobush · June 2012

amy052006:
I need to find the link, but I read somewhere that 86% of pregnancies confirmed to be carrying Downs terminate. Thereby blowing the sanctimonious Bump "I would never terminate" right out of the water. Plenty of people are, they just don't say it.

Yes Selection bias at work, right there.

I did the fully integrated screen (NT scan plus 1st/2nd trimester blood tests), and I would have done it no matter how old I was.

funsize34 · June 2012

It should be routine! Down syndrome may and may not be genetics. Its not pointless to get any of the test that is needed! Im 21 also and just because there is no proven history that anyone in your family have it doesnt mean that you and the father of the baby wont produce a baby who will have down syndrome!

Akorn3 · June 2012

nealbl:

Not me.

A) I would never terminate due to something like this

I really don't need something else to worry and stress about

C) It just gives you probabilities. I am a person the needs definitive answers and I don't like proablilities.

This exactly.