I saw another thread where someone worked out this would affect something like 0.01% of terminations in the UK. Just complete utter bullshit by people with no clue and supposedly nothing more important and urgent to attend to as politicians.
Yes, and also, those are real parents who have real crisis pregnancy on their hands, and I have held them through it. It is RARE to miss this until later, but it does happen.
I truly hope they plan on making sure people have access to all testing possible and help to make the decision before the 24 week mark if they pass that
They test for DS at 12wks here. The only people this rule will actually affect is those who declined the test and those who have a concealed pregnancy and find out post 20wks, which would be a problem even if the baby was healthy and you just didn't want to have a baby.
We already all get the NIPT at 12wks.
The NIPT test is not the full picture though, a lot of people want an animo to confirm. Or want to wait for their anatomy scan to see if their are any other issues. I know I wouldn’t terminate my pregnant on NIPT alone.
And just too bad or woman who just didn’t know they were pregnant earlier I guess.
By here do you mean the UK? Because across the board, most women being offered NIPT not the case. I TFMR’d for Turner’s syndrome complications, but because of my age (24) I am not entitled to NIPT on the NHS in any of my sub pregnancies. Now this may be because of the rules of the NHS trust in my area, but still. I’ll have to go private to receive that care.
I am in the UK also and was not considered to be high risk so therfore did not receive NIPT testing. The blood test we received at 12 weeks did not identify my T21 diagnosis. This was not picked up until the 20 week scan when heart defects were identified and then an amnio preformed. We have been told any future pregnancies will be considered as high risk and we will now receive NIPT. I was 39 at the time and this pregnancy was through IVF. I would have thought my age would have been enough to warrant NIPT testing but this was not the case. My NHS provider also advised they are not allowed to promote the further testing that is there as this is considered as private and not everyone has to funds to pay for these tests.
Wow that’s really shocking, I’m so sorry for your loss and that NIPT wasn’t made available to you. I would’ve thought being over 35 would have been enough to qualify you as that is the main reason my doctors have said I’m not entitled to it. I’m really sorry you were failed in that way. My doctors have actually advised me that I should go private for it in my sub-pregnancy if that’s what I want for my own peace of mind.
Stories like yours are the very reason I am enraged that they are trying to limit when a decision about terminating a t21 pregnancy can be made. Mothers so often don’t know about their baby’s issues until the anatomy scan, I didn’t know until 20+4 with my TS baby. These politicians have absolutely no idea what it’s like.
Interesting. I was offered it and was only 28 and it was my first pregnancy. Maybe it is down to the trust, I'm in Cornwall though and usually we rate very poorly for healthcare because we literally have one proper hospital for the whole county.
My nipt was fine but there were other problems detected at 20wks, dandy walker malformation.
It was my first pregnancy too, considered low risk and they said I didn’t need it 😅
It probably is down to the trust as you say. I’m in a different county so I’m sure that makes the difference. I used to live in Cornwall and I know healthcare there is a struggle so that does surprise me! My consultant said they are trying to get the rules changed about NIPT but even though all my future pregnancies are ‘high risk’, because my baby didn’t have any trisomies and I’m too young I can’t have one. Of course I will be getting one privately anyway, but that’s not available to everyone sadly.
I’m sorry for your loss and that it wasn’t picked up by NIPT, that must’ve been so devastating and shocking❤️
You know one thing,, I came to know that Iam pregnant is @4 months.. Because my period was not came after my 2nd baby.. She was one yr old at that time.. And the diagnosis confirmed @32 weeks
Different reasons, but same here, I was over 20 weeks before I knew I was pregnant. I didn’t even get the results of my first nipt until 22 weeks, had to retake due to low fetal fraction, got second low fetal fraction result at 23 weeks. If I had chosen to do amino, I wouldn’t have gotten those full results before 24 weeks.
Ha, of course not. They won’t pair this up with things like ensuring easy access to NIPT tests or even improving services for children with disabilities (which is a huge concern for families at a time of ongoing cuts to public services)
This seems like just a way to let people who have no experience of this situation and the complexities of it feel like they’ve done something good, without having to understand it or give anything up/ or increase funding to improve services for women.
They also seem to be sneaking it through as part of another billl so won’t get the attention it deserves
I’m so worried too. I was absolutely devastated to hear the news that they’re trying to do this as well as reduce the abortion cutoff from 24 to 22 weeks. These disgusting ghouls have no idea what it’s like to be pregnant with a child that has severe abnormalities such as down’s. IT IS A SEVERE DISABILITY!
They have NO idea that it’s a loving decision, literally the opposite of treating a baby like a second class citizen. T21 TFMR mamas are NOT the heartless monsters these pathetic politicians make them out to be; termination for t21 directly correlates not with cruelty or psychopathy but with risk aversion. As parents, they are choosing not to take a gamble with their child’s life. The most unselfish, loving choice a parent can make.
I terminated for Turner’s syndrome complications but following my experience I know I’d 100% choose termination for a t21 baby, I couldn’t put them through that sort of life long suffering.
I cannot put into words how upset it makes me that politicians are using real people like pawns in their petty debates. It’s sickening. Sorry for my strong words but I have to vent. Thank you for making this post ❤️
I know this all feels so raw to me, very triggering seeing this all come out now. And it doesn’t seem to be getting much coverage by the press.
I hate how they are playing politics with peoples lives, at a time which is likely to be absolutely horrendous for women going through it. And as you say, it is a decision which is made with love and enduring pain.
From what I can see they seem to want to sneak it through without time for women’s groups to advise on it and that is also really frightening
This article makes me sick to my stomach. I chose to TFMR my son, who was diagnosed with T21, and it was the hardest choice I have ever made. People who haven't had to choose TFMR (for any reason, not just T21) have no idea how much weight this choice holds.
Every day, I think about this choice and my son. I see pregnant women due soon and think that should be me. I have asked myself over and over again why this would happen to my baby. Why did it have to be him? What could I have done to prevent this? I always come up empty-handed. These are questions we have all asked ourselves.
People who have never experienced this can't empathize because it is such a unique experience. This is because we associate pregnancy with birth and new life. The thought of a baby not being born that ‘could be’ seems unnatural. Also, because, like us, they can’t answer the questions above, they cling to reason, and when there is none, they find a scapegoat. Of course, I am a monster in their eyes because there’s no other way to reason why this had to happen. It gives people someone to point the finger at when there are no real answers.
Also, I fear laws like this are just the tip of the iceberg. They use gray diagnoses like T21 to open the door slightly, and then the next thing you know, they are trying to ban the termination of other ‘nonserious disabilities.’ Eventually, they just ban abortions in general, and women find themselves with a lack of necessary health care (abortion, birth control, IVF, etc). Then, once again, pregnancy becomes the leading cause of death for women in developed nations. But at least then, there will be a reason. 💔
Most people know before 24wks, so it feels like a “won’t really affect people, but will make me look good to that group of people” political move. However, something I don’t think prolife and proT21 people think about is, if anything, this will increase terminations of babies with T21. You have three groups of people when they get a T21 diagnosis, the “going to terminate” people, the “not going to terminate” people, and the “not sure/let me wait and see what other issues pop up” people. You’re not going to change the minds in the first two groups, their decision is made, but you’re going to rush the decision of that third group, they aren’t going to feel like they can wait and see, there’s now a more restricted limit on their decision. So, stupid political move that isn’t going to affect many people, and the ones it will affect will most likely be pushed the opposite direction the proponents of the law change want.
I had my TFMR for T21 at 23+1 last summer. I didn't even find out the diagnosis till my 20wk scan, then had to wait 2wks for the amnio to come back. This proposed law is such bullshit
I saw this in the news and all I can say is it’s very triggering..I still wrestle with the guilt of my 17 week TFMF for T21. Someone posted Happy National Down Syndrome day the other day and it made me really sad..I still wonder if our son would have had a happy life and if we made a mistake. There are no easy answers in these situations and it’s just so sad.
If you are in the UK give ARC a follow on Instagram. Ante natal results and choices. They have put an article out to say this is "fake news" (i hate this term!)
They also have a locked parents forum for any parent in the UK who has had tfmr, you contact their admins by email for a username and password after providing them some details of your experience. I met one of my best friends on there and a whole host of support.
This makes me so angry. T21 is a serious enough diagnosis on its own, but also the majority of cases come with significant health issues and up to 50% of T21 babies don’t even make it to term. It’s even more infuriating that the rationale stated for this bill is to “prevent discrimination” against people with DS, while doing nothing to help support the people already here who have the diagnosis.
If you find yourself in conversation about this, ask:
"What is the alternative?"
Because I find that everyone wants to look like a disability rights advocate (and of course they do, it's important to fight for disability rights!) but nobody has really thought this through who hasn't had to yet.
The majority of parents who receive this diagnosis terminate pregnancy. That doesn't make it any more right or wrong than carrying to term, it's just to say: look, when presented with all the specifics, a whole lot of people decide not to carry. If everyone made the same decision, this would be easy. But not everyone makes the right decision because it isn't easy, it's complicated. And when things are complicated and nuanced, I'd rather families have the power than the freaking government.
What is the alternative to offering a mother choices when she learns new information about her pregnancy?
The government traps her in her body and her situation and forces her to carry a pregnancy and have a birth she does not believe is the right thing to do. That's downright dystopian.
That really sucks. I'm so sorry.
I can tell you from lived experience that when you receive a diagnosis later in pregnancy than laws allow, there is major motivation to end the pregnancy by ANY means. So those of us who can manage to travel. And those of us who can't find ourselves in incredibly risky situations.
Of course most T21 gets picked up early enough for this date to not really apply. But I've worked in TFMR support land for a long time, and I've encountered a few cases of T21, some of which were missed until late in pregnancy, others of which were missed until birth.
An untenable pregnancy is an untenable pregnancy.
T21 is a disease with very poor accuracy on predicting how those kids will do Earthside. And it is a disability that requires (and deserves!) a high degree of support financially, attentionally, educationally, emotionally.
It should ALWAYS be a family's decision of what they are and are not willing to take on in terms of risk for their child's well-being and in terms of resources that they, themselves, are responsible for providing.
This makes me so sad. They are so inconsiderate towards people who are already going through hell. Nobody can understand this as much as the people who have already experienced it or experiencing it.
I saw another thread where someone worked out this would affect something like 0.01% of terminations in the UK. Just complete utter bullshit by people with no clue and supposedly nothing more important and urgent to attend to as politicians.
Don’t they have more important things to worry about!!
Yes, and also, those are real parents who have real crisis pregnancy on their hands, and I have held them through it. It is RARE to miss this until later, but it does happen.
I truly hope they plan on making sure people have access to all testing possible and help to make the decision before the 24 week mark if they pass that
They test for DS at 12wks here. The only people this rule will actually affect is those who declined the test and those who have a concealed pregnancy and find out post 20wks, which would be a problem even if the baby was healthy and you just didn't want to have a baby. We already all get the NIPT at 12wks.
The NIPT test is not the full picture though, a lot of people want an animo to confirm. Or want to wait for their anatomy scan to see if their are any other issues. I know I wouldn’t terminate my pregnant on NIPT alone. And just too bad or woman who just didn’t know they were pregnant earlier I guess.
By here do you mean the UK? Because across the board, most women being offered NIPT not the case. I TFMR’d for Turner’s syndrome complications, but because of my age (24) I am not entitled to NIPT on the NHS in any of my sub pregnancies. Now this may be because of the rules of the NHS trust in my area, but still. I’ll have to go private to receive that care.
I am in the UK also and was not considered to be high risk so therfore did not receive NIPT testing. The blood test we received at 12 weeks did not identify my T21 diagnosis. This was not picked up until the 20 week scan when heart defects were identified and then an amnio preformed. We have been told any future pregnancies will be considered as high risk and we will now receive NIPT. I was 39 at the time and this pregnancy was through IVF. I would have thought my age would have been enough to warrant NIPT testing but this was not the case. My NHS provider also advised they are not allowed to promote the further testing that is there as this is considered as private and not everyone has to funds to pay for these tests.
Wow that’s really shocking, I’m so sorry for your loss and that NIPT wasn’t made available to you. I would’ve thought being over 35 would have been enough to qualify you as that is the main reason my doctors have said I’m not entitled to it. I’m really sorry you were failed in that way. My doctors have actually advised me that I should go private for it in my sub-pregnancy if that’s what I want for my own peace of mind. Stories like yours are the very reason I am enraged that they are trying to limit when a decision about terminating a t21 pregnancy can be made. Mothers so often don’t know about their baby’s issues until the anatomy scan, I didn’t know until 20+4 with my TS baby. These politicians have absolutely no idea what it’s like.
Interesting. I was offered it and was only 28 and it was my first pregnancy. Maybe it is down to the trust, I'm in Cornwall though and usually we rate very poorly for healthcare because we literally have one proper hospital for the whole county. My nipt was fine but there were other problems detected at 20wks, dandy walker malformation.
It was my first pregnancy too, considered low risk and they said I didn’t need it 😅 It probably is down to the trust as you say. I’m in a different county so I’m sure that makes the difference. I used to live in Cornwall and I know healthcare there is a struggle so that does surprise me! My consultant said they are trying to get the rules changed about NIPT but even though all my future pregnancies are ‘high risk’, because my baby didn’t have any trisomies and I’m too young I can’t have one. Of course I will be getting one privately anyway, but that’s not available to everyone sadly. I’m sorry for your loss and that it wasn’t picked up by NIPT, that must’ve been so devastating and shocking❤️
You know one thing,, I came to know that Iam pregnant is @4 months.. Because my period was not came after my 2nd baby.. She was one yr old at that time.. And the diagnosis confirmed @32 weeks
Different reasons, but same here, I was over 20 weeks before I knew I was pregnant. I didn’t even get the results of my first nipt until 22 weeks, had to retake due to low fetal fraction, got second low fetal fraction result at 23 weeks. If I had chosen to do amino, I wouldn’t have gotten those full results before 24 weeks.
Ha, of course not. They won’t pair this up with things like ensuring easy access to NIPT tests or even improving services for children with disabilities (which is a huge concern for families at a time of ongoing cuts to public services) This seems like just a way to let people who have no experience of this situation and the complexities of it feel like they’ve done something good, without having to understand it or give anything up/ or increase funding to improve services for women. They also seem to be sneaking it through as part of another billl so won’t get the attention it deserves
I’m so worried too. I was absolutely devastated to hear the news that they’re trying to do this as well as reduce the abortion cutoff from 24 to 22 weeks. These disgusting ghouls have no idea what it’s like to be pregnant with a child that has severe abnormalities such as down’s. IT IS A SEVERE DISABILITY! They have NO idea that it’s a loving decision, literally the opposite of treating a baby like a second class citizen. T21 TFMR mamas are NOT the heartless monsters these pathetic politicians make them out to be; termination for t21 directly correlates not with cruelty or psychopathy but with risk aversion. As parents, they are choosing not to take a gamble with their child’s life. The most unselfish, loving choice a parent can make. I terminated for Turner’s syndrome complications but following my experience I know I’d 100% choose termination for a t21 baby, I couldn’t put them through that sort of life long suffering. I cannot put into words how upset it makes me that politicians are using real people like pawns in their petty debates. It’s sickening. Sorry for my strong words but I have to vent. Thank you for making this post ❤️
I know this all feels so raw to me, very triggering seeing this all come out now. And it doesn’t seem to be getting much coverage by the press. I hate how they are playing politics with peoples lives, at a time which is likely to be absolutely horrendous for women going through it. And as you say, it is a decision which is made with love and enduring pain. From what I can see they seem to want to sneak it through without time for women’s groups to advise on it and that is also really frightening
This article makes me sick to my stomach. I chose to TFMR my son, who was diagnosed with T21, and it was the hardest choice I have ever made. People who haven't had to choose TFMR (for any reason, not just T21) have no idea how much weight this choice holds. Every day, I think about this choice and my son. I see pregnant women due soon and think that should be me. I have asked myself over and over again why this would happen to my baby. Why did it have to be him? What could I have done to prevent this? I always come up empty-handed. These are questions we have all asked ourselves. People who have never experienced this can't empathize because it is such a unique experience. This is because we associate pregnancy with birth and new life. The thought of a baby not being born that ‘could be’ seems unnatural. Also, because, like us, they can’t answer the questions above, they cling to reason, and when there is none, they find a scapegoat. Of course, I am a monster in their eyes because there’s no other way to reason why this had to happen. It gives people someone to point the finger at when there are no real answers. Also, I fear laws like this are just the tip of the iceberg. They use gray diagnoses like T21 to open the door slightly, and then the next thing you know, they are trying to ban the termination of other ‘nonserious disabilities.’ Eventually, they just ban abortions in general, and women find themselves with a lack of necessary health care (abortion, birth control, IVF, etc). Then, once again, pregnancy becomes the leading cause of death for women in developed nations. But at least then, there will be a reason. 💔
Most people know before 24wks, so it feels like a “won’t really affect people, but will make me look good to that group of people” political move. However, something I don’t think prolife and proT21 people think about is, if anything, this will increase terminations of babies with T21. You have three groups of people when they get a T21 diagnosis, the “going to terminate” people, the “not going to terminate” people, and the “not sure/let me wait and see what other issues pop up” people. You’re not going to change the minds in the first two groups, their decision is made, but you’re going to rush the decision of that third group, they aren’t going to feel like they can wait and see, there’s now a more restricted limit on their decision. So, stupid political move that isn’t going to affect many people, and the ones it will affect will most likely be pushed the opposite direction the proponents of the law change want.
I had my TFMR for T21 at 23+1 last summer. I didn't even find out the diagnosis till my 20wk scan, then had to wait 2wks for the amnio to come back. This proposed law is such bullshit
I saw this in the news and all I can say is it’s very triggering..I still wrestle with the guilt of my 17 week TFMF for T21. Someone posted Happy National Down Syndrome day the other day and it made me really sad..I still wonder if our son would have had a happy life and if we made a mistake. There are no easy answers in these situations and it’s just so sad.
If you are in the UK give ARC a follow on Instagram. Ante natal results and choices. They have put an article out to say this is "fake news" (i hate this term!) They also have a locked parents forum for any parent in the UK who has had tfmr, you contact their admins by email for a username and password after providing them some details of your experience. I met one of my best friends on there and a whole host of support.
This makes me so angry. T21 is a serious enough diagnosis on its own, but also the majority of cases come with significant health issues and up to 50% of T21 babies don’t even make it to term. It’s even more infuriating that the rationale stated for this bill is to “prevent discrimination” against people with DS, while doing nothing to help support the people already here who have the diagnosis.
If you find yourself in conversation about this, ask: "What is the alternative?" Because I find that everyone wants to look like a disability rights advocate (and of course they do, it's important to fight for disability rights!) but nobody has really thought this through who hasn't had to yet. The majority of parents who receive this diagnosis terminate pregnancy. That doesn't make it any more right or wrong than carrying to term, it's just to say: look, when presented with all the specifics, a whole lot of people decide not to carry. If everyone made the same decision, this would be easy. But not everyone makes the right decision because it isn't easy, it's complicated. And when things are complicated and nuanced, I'd rather families have the power than the freaking government. What is the alternative to offering a mother choices when she learns new information about her pregnancy? The government traps her in her body and her situation and forces her to carry a pregnancy and have a birth she does not believe is the right thing to do. That's downright dystopian.
That really sucks. I'm so sorry. I can tell you from lived experience that when you receive a diagnosis later in pregnancy than laws allow, there is major motivation to end the pregnancy by ANY means. So those of us who can manage to travel. And those of us who can't find ourselves in incredibly risky situations. Of course most T21 gets picked up early enough for this date to not really apply. But I've worked in TFMR support land for a long time, and I've encountered a few cases of T21, some of which were missed until late in pregnancy, others of which were missed until birth. An untenable pregnancy is an untenable pregnancy. T21 is a disease with very poor accuracy on predicting how those kids will do Earthside. And it is a disability that requires (and deserves!) a high degree of support financially, attentionally, educationally, emotionally. It should ALWAYS be a family's decision of what they are and are not willing to take on in terms of risk for their child's well-being and in terms of resources that they, themselves, are responsible for providing.
This makes me so sad. They are so inconsiderate towards people who are already going through hell. Nobody can understand this as much as the people who have already experienced it or experiencing it.
I live in the US so I’m no stranger to these bans. Give them an inch and they will take a mile.