What do you think of Emmerdale’s Downs Syndrome abortion storyline? *contains spoilers MNHQ*

[IntoP20]

I don’t actually watch the programme, but just read a headline that explained two characters (Laurel and Jai) are going to make the decision to terminate their baby with Downs Syndrome.

Is this damaging to new parents /expectant parents and those with Downs Syndrome themselves? Or is this a positive move to reduce the stigma around women being able to make choices about their bodies?

@curliegirlie
💐💐💐

@june2007 I'm inclined to disagree. I'd rather have been asked 15 times and had the option of saying no at every opportunity, than being asked twice and feeling like "I'd made my bed, now I have to lie in it".
Even if the option is always on the table, just not spoken about, I'd find it harder to say "I've changed my mind, can we discuss termination" than a simple "yes" in response to a question.
I don't feel it's a negative view to remind the mother of her choices, as difficult as they are to hear.x

[quote Kiki275]@june2007 I'm inclined to disagree. I'd rather have been asked 15 times and had the option of saying no at every opportunity, than being asked twice and feeling like "I'd made my bed, now I have to lie in it".
Even if the option is always on the table, just not spoken about, I'd find it harder to say "I've changed my mind, can we discuss termination" than a simple "yes" in response to a question.
I don't feel it's a negative view to remind the mother of her choices, as difficult as they are to hear.x[/quote]
I agree with that june2007.

[quote Kiki275]@june2007 I'm inclined to disagree. I'd rather have been asked 15 times and had the option of saying no at every opportunity, than being asked twice and feeling like "I'd made my bed, now I have to lie in it".
Even if the option is always on the table, just not spoken about, I'd find it harder to say "I've changed my mind, can we discuss termination" than a simple "yes" in response to a question.
I don't feel it's a negative view to remind the mother of her choices, as difficult as they are to hear.x[/quote]
But, again, surely it’s also a matter of judging the situation on a case by case basis....maybe there are some situations where it’s appropriate to ask multiples of times if the woman wants to continue with the pregnancy, if she seems distressed or anxious, but in cases where she has stated firmly that she definitely want to keep the child, has asked for it to be included in her notes etc....it’s just horrific and surely has the consequence for some women to make them doubt themselves....

The parents generally know there choices they don,t need to be told at 34+ wks when they are already planning the birth ect that they have a choice to terminate. This has probably already been discussed with them by then.

@june2007

The parents generally know there choices they don,t need to be told at 34+ wks when they are already planning the birth ect that they have a choice to terminate. This has probably already been discussed with them by then.

Well exactly, and I knew a few people this happened to.

@curliegirlie entirely valid and we'd all like to think it was as clear cut as that. Situations change though, feelings change and things are frequently judged wrongly. No harm (other than irritation or annoyance) is done by checking with the mother her thoughts and feelings remain the same. Huge harm can be caused by assuming she'll admit to changing her mind, especially when she's categorically stated previously her position.
@june2007 likely they have been discussed fully but as I've written above, situations, thoughts and feelings change. No harm in checking.

I would like to clarify my position too having been called a 'fundie' which I assume refers to the fact that I am a Christian.

@vdbfamily It refers to the fact that you're a fundamentalist. Many Christians aren't anti-choice, homophobic, or misogynistic. Fundies tend to be. And want others to be unable to have abortions or get married because of their fundie beliefs.

I suppose proper training could address this. (It's too much to assume they use common sense / human kindness!) Asking - how are you feeling, do you want to go through your options again, and really open questions like that would tell a clinician if they need to ask further blunt questions. Rather than go straight in with are you sure you don't want to terminate? When a woman is clearly planning a birth.

@Doughnut100

I suppose proper training could address this. (It's too much to assume they use common sense / human kindness!) Asking - how are you feeling, do you want to go through your options again, and really open questions like that would tell a clinician if they need to ask further blunt questions. Rather than go straight in with are you sure you don't want to terminate? When a woman is clearly planning a birth.

Yup, again, this is where the DSA’s “Tell it Right, Start it Right” training is so important.

For many of us in the DS community, we are not against the NIPT Test per se, we are not all anti-abortion, but it just all HAS to be accompanied by balanced information, so INFORMED choices can be made. It sounds like this storyline will perpetuate tired stereotypes, and be a real missed educative opportunity, either to present a less negative picture of DS and how HCPs deal with telling parents to be, or to tell largely untold stories of TFMR for other conditions with really are incompatible with life.

Its all well and good to say 'but some people with DS are high functioning, independant and hold down jobs etc', but a pregnant woman won't know if that will be the case, or if their child will need round the clock care for their entire life and have a host of other health problems. For a whole variety of reasons, a women might not be able or willing to provide that high degree of care, and thats ok.

I hope that this storyline will destigmatise the issue, but I worry it won't even have the chance to do so if people keep shutting down the conversation around it.

I’m all pro choice but let’s be honest at 38-40 weeks we are not talking about cells anymore, it’s very different situation. We are talking about human being.

By the way when we will be able to diagnose autism during pregnancy will we abort these babies at 38 weeks as well? Some of them are not high functioning at all.

@greenlynx

I’m all pro choice but let’s be honest at 38-40 weeks we are not talking about cells anymore, it’s very different situation. We are talking about human being.

By the way when we will be able to diagnose autism during pregnancy will we abort these babies at 38 weeks as well? Some of them are not high functioning at all.

I don’t know if we’ll ever be able to prenatally diagnose things like severe autism. Hopefully some day

Lockupyourcinnamon
I don’t think we will be able diagnose how severe, we are not able to diagnose the level of learning disability in Downs Syndrome.

@greenlynx

Lockupyourcinnamon I don’t think we will be able diagnose how severe, we are not able to diagnose the level of learning disability in Downs Syndrome.

yes that’s true. I suppose it would be impossible to know the outcome for any child!

presented with up to date information about real, lived experiences with children with Down’s syndrome. As the doom and gloom scenario couldn’t be further from the truth

The "doom and gloom" for many IS the truth. Your positive notions that having a DS child is a good thing that people should want is so totally unfair to all of the people whose experience is not that postive.

Present both sides, sure, but don't try and tell us that we're being lied to and that its all great. Thats not true and its ignoring the lived experience of parents and marganlising them.

MyDingALingADingDong writes vehemently of the difficulties of raising a child with Down Syndrome. Are you are a parent of a child with Down Syndrome? If so and you are having a hard time my heart goes out to you.
However If as I suspect you are just voicing an opinion not born out of any lived experience I would strongly challenge your post.
I am the parent of a child with Down syndrome who is not a high achiever.
My child nearly 4 is non verbal, not walking and has feeding issues.
However we are a happy family, our child is loved and thriving despite some considerable health challenges.
Speaking with the authority of having a child with Down Syndrome I know life is better for having my child.

I fully respect that other families may choose not to continue with pregnancies with a Down’s Syndrome child.

I note on your earlier post that you don’t think abortions happen past 32 weeks, they are thankfully rare but in my own health authority a baby with Down Syndrome was terminated at 39 weeks.
I find the knowledge of this horrific for all concerned.

I agree that prospective parents need balanced information to enable their decision making around termination. However your doom and gloom post is not reflective of our lives.

My uncle had Down’s Syndrome , he lived happily semi independently until his mid 50s. It was an easy choice to continue with my pregnancy as I knew the joy and love a person with Down Syndrome can bring.
With rising abortion rates people with Down Syndrome are not as prevalent in our communities and so it becomes something to be feared.

It's such a personal choice. Women should be supported in whatever choice is right for them, whether having a termination or continuing the pregnancy. Full support should be available for families of children with Downs. There isn't enough support at the moment for any parents with children with disabilities. It isn't either/or. It's possible to support the choice to have a termination, and the strong need for much more support for parents who have the baby. I know a family with a severely disabled child and they didn't get anywhere near the amount of support they needed.

FWIW I wouldn't have continued a pregnancy but this is my choice. I support anyone making their own choices. No one takes the decision to TFMR for medical reasons lightly.

I wasn't keen on Sally Phillip's crusade against NIPT. It means more women would need amnio when NIPT is much safer for the baby due to the miscarriage risk with amnio. It's not her place to make other women's decisions for them.

@soontobe6

MyDingALingADingDong writes vehemently of the difficulties of raising a child with Down Syndrome. Are you are a parent of a child with Down Syndrome? If so and you are having a hard time my heart goes out to you. However If as I suspect you are just voicing an opinion not born out of any lived experience I would strongly challenge your post. I am the parent of a child with Down syndrome who is not a high achiever. My child nearly 4 is non verbal, not walking and has feeding issues. However we are a happy family, our child is loved and thriving despite some considerable health challenges. Speaking with the authority of having a child with Down Syndrome I know life is better for having my child.

I fully respect that other families may choose not to continue with pregnancies with a Down’s Syndrome child.

I note on your earlier post that you don’t think abortions happen past 32 weeks, they are thankfully rare but in my own health authority a baby with Down Syndrome was terminated at 39 weeks.
I find the knowledge of this horrific for all concerned.

I agree that prospective parents need balanced information to enable their decision making around termination. However your doom and gloom post is not reflective of our lives.

My uncle had Down’s Syndrome , he lived happily semi independently until his mid 50s. It was an easy choice to continue with my pregnancy as I knew the joy and love a person with Down Syndrome can bring.
With rising abortion rates people with Down Syndrome are not as prevalent in our communities and so it becomes something to be feared.

This, this, absolutely this. Yes, my daughter is lucky not to have had lots of the health issues and is currently thriving (with the support of a 1-2-1) in reception at a mainstream school. However, I know lots of other families through our local charity whose children have been slower to meet milestones such as walking (my daughter was nearly 3 so not exactly speedy herself) or have had to deal with lots more health issues. But not one of them would wish away their child or view their lives as doom and gloom. That’s not to say life is always sunny days and rainbows - but is it ever with any child?! I think I have more problems with my 2 year old than I do with my 5 yo who has Down’s syndrome! She’s certainly nowhere near as clingy and didn’t have the terrible twos, that my youngest is currently right in the middle of! Like all lives and all families we have our ups and downs. There are lots of blogs out there, such as ‘Don’t be Sorry’ which present positive but ultimately honest accounts, frustrations and all.

“ I wasn't keen on Sally Phillip's crusade against NIPT. It means more women would need amnio when NIPT is much safer for the baby due to the miscarriage risk with amnio. It's not her place to make other women's decisions for them”.

I don’t agree with the full on anti-NIPT crusade, but there is the underlying issue that it appears to be being rolled out before HCPs are adequately presenting an up-to-date picture of life with (children with) Down’s syndrome. The Tell it Right, Start it Right training still has a long way to go. I remember how God-awful it was when we were told they suspected my DD had Down’s syndrome. And that was after she’d actually been born. I dread to think how we’d have reacted if we’d had the same conversation antenatally. And NIPTs don’t remove the need for amnios - they are not diagnostic, just more accurate than the combined test.

I am the aunt of a child (practically adult now) with DS. A child with multiple health issues, multiple surgeries, extreme learning disabilities, and autism. A child that needs constant supervision and intervention.

I'm very happy for people who have DS children who have happy lives and who bring joy to their parents. I'm happy if you life is better for having your child. But PLEASE stop trying to speak for everyone, and PLEASE stop pretending that there are many people who are not like you. Who are not coping, who are not happy, who do not have the ability to say " I wouldn't change this for anything".

Our families are not "doom and gloom scaremongering". This the reality. Be happy its not your reality, but don't pretend we don't exist.

She’s certainly nowhere near as clingy and didn’t have the terrible twos, that my youngest is currently right in the middle of!

There's still time!

@curliegirlie

“ I wasn't keen on Sally Phillip's crusade against NIPT. It means more women would need amnio when NIPT is much safer for the baby due to the miscarriage risk with amnio. It's not her place to make other women's decisions for them”.

I don’t agree with the full on anti-NIPT crusade, but there is the underlying issue that it appears to be being rolled out before HCPs are adequately presenting an up-to-date picture of life with (children with) Down’s syndrome. The Tell it Right, Start it Right training still has a long way to go. I remember how God-awful it was when we were told they suspected my DD had Down’s syndrome. And that was after she’d actually been born. I dread to think how we’d have reacted if we’d had the same conversation antenatally. And NIPTs don’t remove the need for amnios - they are not diagnostic, just more accurate than the combined test.

NIPT is considered screening rather than diagnostic but the false negatives are very low and it is much more accurate than the combined test. If it came back with a high risk result, you would need an amnio but I was told I wouldn't for a negative. With NIPT, it reduces the miscarriage risk as if you got a high result on the combined test, then wouldn't need an amnio unless the NIPT came back high too.

It's hard, you want to give women all the information without pushing one way or the other, whilst giving them all of the outcomes but not making it difficult to say they want a termination or want to go ahead. I worry if it's only the positive that women will feel they have to go ahead, even if they don't want to. But it is important to show all experiences. And more than anything to offer proper, ongoing support to anyone who does go ahead. I'm sorry it was so awful when your daughter was diagnosed, they should have been more supportive.

Can’t see why this would make a good soap storyline at all

@MyDingALingADingDong

I am the aunt of a child (practically adult now) with DS. A child with multiple health issues, multiple surgeries, extreme learning disabilities, and autism. A child that needs constant supervision and intervention.

I'm very happy for people who have DS children who have happy lives and who bring joy to their parents. I'm happy if you life is better for having your child. But PLEASE stop trying to speak for everyone, and PLEASE stop pretending that there are many people who are not like you. Who are not coping, who are not happy, who do not have the ability to say " I wouldn't change this for anything".

Our families are not "doom and gloom scaremongering". This the reality. Be happy its not your reality, but don't pretend we don't exist.

The thing is that is is predominantly the "doom and gloom" that's is given during testing. There's needs to be a balance.