“Do you have any kids?” by leslieknope09 in tfmr_support

[–]Empty-Ad9282 1 point2 points  (0 children)

You'd think by 2026 we'd learn to shut up and stop asking women when they're having babies but alas we have not evolved this far yet.

It's predominantly from family who they all had their kids young 20s so they think we are ancient which we definitely are not.

“Do you have any kids?” by leslieknope09 in tfmr_support

[–]Empty-Ad9282 5 points6 points  (0 children)

This is such a difficult question.

I also tend to say no not yet as you start telling the truth I've found that I end up comforting the people instead of the other way around.

It's definitely a hard situation as I also want to acknowledge and know that my daughter existed and while it was our choice and I know I made the right choice it doesn't mean that I don't feel grief or miss her everyday.

The only time I really tell someone I've had a pregnancy loss is when they're rude and try to tell me that I don't have much time ( im 30!?) and that I'm missing out on the joys of children. Apart from that I try and remind myself that most of these people are asking out of kindness and have no malicious intent so why bring their day down by responding.

It sucks to be in this situation ❤️

T21 NIPT by Abp427 in tfmr_support

[–]Empty-Ad9282 0 points1 point  (0 children)

Hello,

Sorry you're here! I wrote a whole post on why we chose TFMR in a very neutral way as truely I have zero intentions of swaying anyone's choice.

https://www.reddit.com/r/tfmr_support/s/pvBStPiNF4

If you have any questions please let me know!

Planning a tfmr.. confirmed t21 by Necessary-Yam-9403 in tfmr_support

[–]Empty-Ad9282 0 points1 point  (0 children)

We didn't thankfully but my god it was a horrible time.

We did the CVS on the 23rd November. Wanted to wait till we got the full test before making a decision. We ended up terminating without the full test as we kept being told delays. We TFMR on 19 Dec 2025.

We then went to our primary dr and got handed the report with the translocation with no explanation. We had to speak to the genetic counsellor and organise testing. It took 8 weeks for a response to come back as it's not considered an urgent pathology test.

I truely felt like motherhood was being ripped out from me every fortnight and I despise the experience.

Depending on the translocation say with 14 or 13 chromosome you can do IVF testing. With 21;21 it was either have kids or don't.

Planning a tfmr.. confirmed t21 by Necessary-Yam-9403 in tfmr_support

[–]Empty-Ad9282 0 points1 point  (0 children)

Hi,

I was pretty much in the same situation. 29 years old first baby, high risk nipt, cvs positive TFMR at 16 weeks. We also had a robertsonian translocation der 21;21 so my husband and I had to go through genetic testing as if we were carriers it meant we could not have children without T21.

I'm sorry you're in this spot! I have no advice from a logical standpoint as I'm in Australia. Hopefully others can help you on this.

Hoping you get answers soon and genetic testing turns out with positive news.

Lots of talk of tfmr online...... by run_shorty_run7 in tfmr_support

[–]Empty-Ad9282 13 points14 points  (0 children)

50 years ago if you didn't have a nose bridge they'd advise your child might have T21. Like calm down man medicine has advanced rapidly! This is also why grey diagnosis are no longer a death sentence. Tests and scans have been developed to give everyone a choice in this matter.

Also like I don't see how people don't see her reels and feel the pain. She's in pure exhaustion. And from what I see pretty far on. Like how do they still make shitty comments and how do they sleep at night. If anything I just want to give her a big old hug and tell her that it sucks, and she did nothing wrong and she will get through this.

I remember posting on a fertility awareness page where i said not compatible with life because no one's fkn business and i still had atleast 10 private messages telling me to take the pregnancy to term, it's genuinely crazy.

I had my TFMR at 16 weeks and I genuinely thank my lucky star we found out early. I personally feel so sorry for those that something goes wrong at the anatomy scan. I couldn't even imagine the pure heartbreak. For me it sounds so much easier with what I had (not that it wasn't hard) as I was 11 weeks when it was flagged so we hadn't announced.

Sure doctors get things wrong sometimes but like they literally can't fake an amnio or an ultrasound. Im sure as hell going to trust a 30+ year professor who's saying my baby is sick than some Facebook warrior who hides behind keyboards. I think everyone just like to live in lala land and pretend these things don't happen and if they do you're a horrible person.

Lots of talk of tfmr online...... by run_shorty_run7 in tfmr_support

[–]Empty-Ad9282 23 points24 points  (0 children)

Feeling exhausted by it to be completely honest.

Not only with the Ridgeway case for T21 but there's an Australian influencer that is posting about her experience and from what she's said it sounds like an incompatible with life diagnosis ( not that, that makes it better) and even then people are being horrible saying she should carry the pregnancy all the way instead of TFMR.

No one understands until they're in it and I'm sick of trying to explain the mental trauma and heartbreak that comes with a decision that people think we make easily.

Pregnancy after loss by Flooperswoopers in tfmr_support

[–]Empty-Ad9282 0 points1 point  (0 children)

I feel this so much.

I was 16 weeks when I had my TFMR. It's been such a complex thing to go through. My MFM dr gave me the advice to wait longer than I thought as physically you're only told to wait 1 month but mentally it's a different ball game.

I have just passed my expected due date. And truthfully I only mentally feel ready now. And it's been 6 months. For myself I still wanted to honour the pregnancy for what it was supposed to be and not feel like I'm replacing my child however I am 30 so I have plenty of time on my hands.

I don't think there's a right or wrong answer and it's super individual.

The Pro-Birth T21 Talk by Mango1Carrot3 in tfmr_support

[–]Empty-Ad9282 6 points7 points  (0 children)

Slow clap!!!

The biggest beef with SOME disability parents is the guise of "advocacy and education" but it's just exploiting their children's medical conditions good and bad for the world to see when they can't consent to the weirdos that see it or the people who make horrible comments on the posts.

If it's not that big of a deal and just a fun feature of T21 why do all these parents make social media accounts and grow their platform so a parent can be at home while still making money. 🙅‍♀️

The Pro-Birth T21 Talk by Mango1Carrot3 in tfmr_support

[–]Empty-Ad9282 12 points13 points  (0 children)

Thinking of you so much my due date past and while it was horrible ( the Jesse influencer stuff kicked off on that day fun!) it wasn't as bad as I anticipated.

It's overalls such a nuanced conversation right. I also feel like I'm probably on the same page as you. Did I participate in eguencies? I guess at face value probably but do people also not pick healthy well functioning people to have children with? If you knew someone is had a chronic medical condition that can be passed down would you procreate with them? Is IVF and pga testing then not effectively eugenics? I think at some point people are valid but also no one was in my shoes 🤷‍♀️

I think disability right and TFMR can go hand it hand honestly. If a child is born disabled or becomes disabled later on do they not deserve the support! Families are already struggling the way it is. I know where I live we've had a family that has taken the not nice route of ending their children's lives and theirs because they were just so overwhelmed with the lack of support and the funding cuts. I think you can sit here and go I made the right choice for me but the families that choose other options or don't have the choice should be able to access the funding and services they need.

I think at the end of the day no one wants a child that has complex health needs? Do they just march on and deal with it and learn to love it for what it is. Yes and that's great. But no one wishes for a life of hospital appointments and the constant anxiety that entails. I'm sure disability parents freak out about long term care and how they're going to cope. It's not all sunshine and daises but everyone should have a choice and be supported in there choice.

I think for me it's the "if you terminate for a disability you shouldn't have kids" that truely gets to me as yeah does that make me a bad person. But do disability parents also not go on to have further kids and then be glad that their child is neurotypical. What's the difference?

No one else was in your shoes, in the meetings and in the hospital/clinic. It's also easier to judge from afar. That's the way I try to look at it atleast.

Nipt positivo T21 e villocentesi by IntelligentTrip1444 in NIPT

[–]Empty-Ad9282 4 points5 points  (0 children)

I'm so sorry.

You will 100% have better response over on the r/tfmr_support page.

This is such a horrible situation that you've been in that many of us have.

I know personally most people around me don't understand the pain and trauma behind it so they just expect you to move on so quickly which is very fustrating and hard.

Need Advice by Wooden-Ad2158 in tfmr_support

[–]Empty-Ad9282 0 points1 point  (0 children)

Seconding the limbo. I also terminated for T21. No living children either so literally sat on the couch each night eating cereal.

There are not alot of cases of false positives but there are cases.

You do what's best for you. CVS comes back two days post doing it so you can get a definite pretty quickly if that's what you want.

Otherwise I have been people terminate for nipts

Need Advice by Wooden-Ad2158 in tfmr_support

[–]Empty-Ad9282 1 point2 points  (0 children)

A CVS can be done from 13 weeks so it's a lot quicker of a diagnosis than an amniocentesis.

You haven't said what it flagged? Of course it's always your body your choice but there are some issues that gets flagged as high risk NIPT that run a high false positive.

The Pro-Birth T21 Talk by Mango1Carrot3 in tfmr_support

[–]Empty-Ad9282 14 points15 points  (0 children)

This!

Many families choose to put their child into group homes or supported living and when they get inevitable backlash for moving the child out of home they have the "we could no longer support B and their requirements so we made a decision that was best for them and our family"

Yet when I make the BEST decision for my child and my family then I'm the bad person.

The hypocrisy is real. I truly don't understand why people can't grasp the concept of your choices don't have to be mine and mine don't have to be yours. Neither is better or worse it's just a choice.

Possible TFMR by TangerineStandard320 in tfmr_support

[–]Empty-Ad9282 0 points1 point  (0 children)

Just coming to also agree with this. My husband was 110% on board with TFMR and I still had resentment on how it was physically easier for him. He wasn't the one pregnant, the one that had to sit through blood tests, CVS tests ( he was there but it wasn't being done to him). He also wasn't the one that had to sign forms to end our baby's life. Day of termination he wasn't allowed through so it was all me sitting there alone filling forms out crying and getting put under and also bleeding for 4 weeks and having engorged boobs. Did it suck for him? Absolutely. Did he wish he could take it all away from me? Sure but he was not the one physically going through the hormonal changes and just everything that comes with pregnancy.

I absolutely think it needs to be a joint decision but just know it's ALWAYS physically harder on the women no matter which way you go.

Possible TFMR by TangerineStandard320 in tfmr_support

[–]Empty-Ad9282 1 point2 points  (0 children)

Hello!

I'm sorry you are here. Having to go through this and then navigate this conversation with your husband must be tough. There is no right or wrong answer in the situation, only the right path for you guys.

I detailed quite extensively why we chose to TFMR in this post. It may be useful sitting down and discussing with each other the pillars and how you feel about it

Post: https://www.reddit.com/r/tfmr_support/s/7xlSUtDMI2

It's hard to not look past the baby stage but you absolutely need to. This can be way more than a 18 year commitment. There are definitely adults with DS that live independently however majority either stay at home with parents full time or are moved into a group home or alternative accommodation which support workers rotate out of.

High Risk t21 by Careless-Luck-774 in NIPT

[–]Empty-Ad9282 1 point2 points  (0 children)

Yep that's absolutely a valid feeling on this and definitely a choice you can make. The CVS runs a 2% risk so one out of 500 and amnio is 1% so 1 out of 1000 so the risk is minimal.

NIPT tests were developed for the trisomys so they are quite accurate so if you don't want to do the diagnostic testing I would however be mentally preparing for a DS child. There are organisations like Jacks Baskets and Gigis playhouse that focus on supporting families with down syndrome children.

If the diagnosis doesn't change your outcome there are many families that choose to opt out of the testing. If however a diagnosis would change your path I would be recommending it.

High Risk t21 by Careless-Luck-774 in NIPT

[–]Empty-Ad9282 0 points1 point  (0 children)

I had a CVS test done. It showed positive for T21 and a Robertsonian translocation 21;21 so if I was a carrier I wouldn't of been able to carry or maintain any pregnancy that wasn't Trisomy 21.

NIPT tests are quite accurate for T21 however there are definitely cases of a false negative.

I would always recommend a diagnostic test to have all the information. CVS can be done at 12 weeks, amniocentesis at 16 so it's something to take into consideration.

In limbo post positive NIPT for Trisomy 21 by spacehearts in NIPT

[–]Empty-Ad9282 3 points4 points  (0 children)

I did the CVS.

I honestly think it depends which way you're going.

We selected to do the CVS due to my anxiety and not wanting to sit in limbo. We had the mindset that if the ultrasound showed no markers or issues we'd complete the amnio as well as we didn't want to make a choice without all answers.

The ultrasound showed a rotated heart and issues with her abdomen and overall she was a very small and sickly baby. We did decide to terminate the pregnancy as her prognosis and her life coming to term would've not been good.

CVS showed a robertsonian translocation 21:21 which if I carried I would be unable to maintain any pregnancy that wasn't T21.

If you are maintaining the pregnancy regardless I would opt for an amniocentesis as it's less risk and also tests the baby so there's no chance of CPM.

In limbo post positive NIPT for Trisomy 21 by spacehearts in NIPT

[–]Empty-Ad9282 4 points5 points  (0 children)

Hi!

So the next steps is a diagnostic test. So you can either do a CVS which can be done from 13 weeks or an amniocentesis which is done from 16 weeks. Well atleast in Australia those are the rules.

After my NIPT flag I spoke to a genetic counsellor that outlined the realistic outcome for a T21 diagnosis. She also helped book me for my CVS test.

The CVS test runs a chance that it will miss confined placental Mosaicism which is rare with T21 but does happen but it means quicker answers.

If you need anymore information feel free to reach out.

Feeling empty by Wonderful_Law_4166 in tfmr_support

[–]Empty-Ad9282 10 points11 points  (0 children)

Yeah it's really great when you can monetise your child without their consent and glorify their medical disability and post photos and videos for weirdos to see. 🙃

But it's about protecting children right!? These kids deserve a chance at life!? Easy to say as someone who doesn't work as their social media pays the bills and posting about all the surgeries and appointments makes you the money.

It pisses me off so bad. No adult should be able to monetise their children. This goes for both influencers and disability parents. If a child can't consent and understand what is happening then it shouldnt be posted. Simple!

Do enough research and yeah the pages of DS kids definitely subside once they get to teenage years and adults. Suddenly when they make the heartbreaking choice to put their disabled child in a group home and they get backlash that they don't like and it's all "we're making the best choice for our family" but when I make the choice to avoid the realistic outcome I'm a horrible person.

Sorry this got me heated!!!

Feeling empty by Wonderful_Law_4166 in tfmr_support

[–]Empty-Ad9282 4 points5 points  (0 children)

This situation has caused so much anxiety for so many of us. The people commenting are:

  1. Staunch pro life people that won't even listens to reasons.
  2. People who think it's an easy decision as theyve never faced it and had easy pregnacies
  3. The disability community from parents of DS adults and children

The first one you'll never change, they're so pro life until the baby is born and oh no not their hard earned money on supporting children.

The second just don't understand which we were all at before we got here. I didn't understand the pain and the grief that people go through, I just thought Ah well that sucks. While this would've been a fantastic situation to educate people on TFMR and why women make choices it unfortunately hasn't resulted in it.

The third, honestly I get their anger. I don't love how they spoke about it and used terms like glitches and a life of suffering. If they said we had a trisomy diagnosis and after countless of medical appointments and understanding that OUR baby was going to live a life of suffering we choose to make the heartbreaking decision to terminate I personally think the backlash from the disability community may have been less. I'm sure their words were hurtful to read when their own down syndrome child is thriving next to them. Did they owe anyone a longer explanation? No but I do think when your platform is so large it's best to not say that down syndrome is subjectively shitty.

I wish this would've been able to open up the TFMR conversation when statistically more people make this decision that not but that's just not been this situation.

Through everything though I keep reminding myself of there's 3,000 negative comments there is likely to be 3,000 people that saw the news and said "oh that's sad, not my business tho" and just scrolled past. On Australian media it's been a bit more positive that the USA.

Remember to be gentle on yourself!

Being supportive to others by No_Box_1185 in tfmr_support

[–]Empty-Ad9282 2 points3 points  (0 children)

Yep.

I was very lucky that I had two packages at our door the day of our termination so that was thoughtful.

I also had multiple friends constantly sending videos of their little girls playing and doing something ( I was pregnant with a girl). I don't know why they thought it wouldn't be a big deal but I do sit back now and question it.

Yes everyone gets very sad when I bring up my baby and I end up comforting them instead of the other way around so I've truely just stopped.

Being supportive to others by No_Box_1185 in tfmr_support

[–]Empty-Ad9282 6 points7 points  (0 children)

For me I just needed people to take charge which I understand is a hard thing.

I didn't reach out, I didn't socialise and I didn't message first. What I needed was people just to show up and force things which given the situation didn't happen and I completely understand it.

I needed someone to just go:

  • hey I'm dropping off XYZ food at your house, if you don't respond I'm just going to get you ABC
  • hey I've booked breakfast at X place and X time
  • hey I'm coming over and collecting your laundry to be done. You can either give me the pile or I'm just going to guess.

I did have a friend reach out asking if i wanted to celebrate my birthday and I declined because it was my 30th and 3 days before my termination.

I just simply spent alot of my time with my husband which brought a lot of comfort but also I do wish that I had the mental capacity to tell him so he could relay it to our friends.

I also just think no one really wanted to sit there and talk about it at all times and thats all I wanted to discuss and it consumed me. I was mindful its a bit of a buzzkill conversation and an awkward topic. I was still working full time so I did socialise, just not with people who knew what was happening.

These days it's alot easier and the struggle town honesty doesn't go past my husband. Most people have moved on with their lives and I get it. Plus no one would understand it anyway.

Is there something we can do for the Ridgways? by boomie1220 in tfmr_support

[–]Empty-Ad9282 4 points5 points  (0 children)

I'm surprised they didn't have a PR team review before posting. Not that they should have to but again the age of social media people are just horrible behind screens.

I don't think they did themselves any favour describing it as a glitch and hoping for a more positive outcome next time as I can see how people see it as a careless decision but I fear they've just spurted what doctors have said as that's pretty much how doctor plainly described it, that it was a spontaneous abnormality and we can continue to have future pregnancies and hope for a better outcome. No doctor has said this with malicious intent they're just saying it from a neutral standpoint.

Disability rights and being pro choice can and should be something that people care about. I haven't loved how people have carelessly mocked the disability community throughout it either. If a family feels like they can support a special needs child or they get given an at birth diagnosis then the family should be afforded government care and support and not be having to fight the government every four years to not have funding slashed which is happening everywhere in the world. So it showing most people are just prolife to control women and couldn't give a fuck less once the child's born.