To draw your attention to this U.K. abortion law court case?

[Wouldloveanother]

Evening ladies
in light of Roe v Wade, it seems more important than ever that we are vigilant about abortion rights here in Britain.
there is an upcoming case at the Court of Appeal which seeks to repeal section 1(1)(d) of the Abortion Act 1967. Which permits later terminations for fetal abnormalities.
the hearing is on 13th July (next month).
very few posters seemed to be aware of it, so thought I would open it here for anyone who wishes to discuss.
thanks

Firstly I'm sorry your life hasn't been enhanced by knowing someone with down syndrome. Your vision of down syndrome appears to be very ill informed and outdated. An
d secondly why are you just targeting down syndrome? Why not go along the whole eugenics pathway and aim to eliminate all disabilities and so called drains on our services. Many people choose life styles which will require alot of care at some point, let's just deny them treatment and save some money too. Some families have genetics which make them have a high chance of developing conditions that will cost the NHS money. Let's just stop them from breeding. It's a slippery slop trying to eradicate a whole group of people from our society.

@milb1 I agree that we should not be persuading women to abort just to save the world money. That is where any agreement between us ends. For every family whose lives have been 'enriched' by knowing someone with DS, there is at least one whose lives have been the exact opposite. People who romanticise DS do nobody a service, and ultimately it should be up to the individual woman to decide whether or not she want to take on the responsibility of raising a child with lifelong and often serious difficulties.

The issues around health risks for people with DS are very real and the research on the incidence of dementia is robust. Stop minimising that.

Then you have no idea what it is like to learn that your wanted, loved, prayed for baby is very ill, will require major interventions and operations at birth, will suffer, and will likely succumb to sepsis before they ever leave a hospital incubator.

@Lola4321 what on earth are you talking about? You’ve said so much that is incorrect in your posts I’m not even sure where to start. The majority of people with DS, if given access to education, will be literate. They tend to be visual learners and so early reading skills in particular are encouraged. And your point “Asking a person with DS if they're happy is quite redundant. They don't understand otherwise.” is just such a strange view. No one knows any differently to their own experience. Emotions are subjective. And people with DS experience a full range of emotions - they understand what it is to be happy.

If someone says they are happy and have a good quality of life who on earth are you to decide that view is not valid because they have a disability?

I don’t know if you’re being deliberately offensive or you just have an incredibly archaic view of disability but it’s an odd take.

@pointythings again, there’s good, robust evidence that families with a member who has DS are generally positive about the experience. It’s well documented that it’s one of the easier disabilities to parent. Of course there are challenges, but it’s disproportionate to suggest that in most cases this leads to real hardship. Of course the high risk of dementia is real, but dementia affects 1 in 6 of the general population over 80 and 1 in 14 over 65. Yes, it affects people with DS earlier. So let’s invest in social care and research.

I find it fascinating how much DS scares people. I don’t know if it’s because they look different, or because of the learning disability, or because it’s something lots of women confront through the screening programme.

There’s just no need to demonise a whole group of people to make a point about abortion. The pro choice arguments are valid on their own.

This isn’t just aimed at you but I can’t think of any other group where people could just spout such massive, out of date generalisations about a minority group and not be expected to back it up with evidence (not anecdote). But disability is fair game, isn’t it. Learning disability even more so.

Early as possible, late as necessary. I’m with you. Shitting on a minority group to make a point, I’m less keen on.

@Lola4321 where are you getting this stuff from? It’s just not evidence based. No one’s suggesting people with DS are reading Ulysses but your view is just so extreme and at best about 50 years out of date. We don’t stick kids with DS in institutions any more. We educate them. They have (usually mild to moderate) learning disabilities. That doesn’t mean they can’t learn. It means they need support.

Having worked with many families of children and adults with DS, including my own, those who would whole heartedly say their lives have been 'enhanced' by it are very, very few and far between.

Women have a right to choose what their futures look like. And that also includes whether it would be as a parent to someone with life long complications and needs.

I would have a termination at full term if there was a late diagnosis - because that isn't the life I want. For me or for my children. That's my choice.

Thankfully, NIPT becoming standard practice eventually and similar, will make the choice much easier and reduce the risk of late diagnosis.

Trigger Warning - TFMR

I have had two TFMRs. I'm going to share my story now. One tfmr at 21+4w and one at 15w. My two had myelomeningocele spina bifida with Arnold Chiara 2 malformation. He had ventriculomegaly, but it was borderline, as in, it was at the top end of what is considered normal for a fetus at that gestation.

A "grey" diagnosis, because it not incompatible with life, but is with quality of life. Mine were very seriously affected, severe cases.

I was given a 30% chance of my DS2 making it to birth live. And then it was touch and go if he'd make it through birth live. And then at birth he would have required an operation to put in a brain shunt. He would need major spinal surgery to close up the hole in his back which was pulling his brain into his neck, and causing damage every time he moved in the womb. He already had no real movement in his legs. And then having his bowel reconstructed so that he would never use a toilet normally. He would always have a bag for both.

The chances of him having seizures and needed a breathing and feeding tube permanently were a given. And then you add infections in and the chance that the shunt could fail, his kidneys, heart, lungs could fail, he could go into renal failure at any moment.

I couldn't do it to him, and then her (my third pregnancy was a daughter). Condemn them to a life of pain, suffering and not understanding why.

It was, and still is, the worse experience I have ever been through. To choose to end a pregnancy of a wanted baby is hell on earth. The horror is tangible. And I have done it twice.

TFMR is never undertaken lightly. It is compassion and kindness. It is the love that we have for our babies that makes us take on their pain, so that they never experience it.

And the grief is layered. You grieve for the baby you thought you were having, the healthy baby that came home. You grieve for the baby who is living, but will suffer, whose life will never be simple or easy, who will have to fight every day. And you grieve for their death, the loss of them, which ripples into your every day thereafter. And for the loss of you, because you are a different person afterwards. Forever changed and scarred by it.

You bounce into your scan, excited, nervous, hopeful. Then the world falls down around you and you are left trying to Google, research, understand, find the least worst scenario and pin everything on that. You find out that even the least worse scenario is still awful and you choose, you decide, and then sign the paperwork while a consultant looks at you with a kind face, and a midwife holds your shoulders. You go between the appointments hoping that your baby passes on their own, so you don't have to choose.

You pack a hospital bag much earlier than you anticipated. Instead of happily putting in freshly washed baby grows and vests, nappies and a coming home outfit. You choose which blanket you want to wrap your dead baby in, how soft is it? Will it be too big? You give them a name, something which has meaning, knowing that you won't be putting it into silly songs or shouting it across a playground.

And you go in to start the process. It's called a compassionate induction. It's birth. You labour. Pain, vomit, blood, pushing. But instead of a wonderful ending with joy and relief, your baby slides silently into the world and your heart breaks into a thousand pieces.

I let out a sound that my husband says was the most haunting wail of distress he's ever heard. Like a wounded, broken animal.

And then you do the memory making. Bearing in mind, these are the only memories you will ever have. Hand and foot prints, maybe bathe them, sing them nursery rhymes and read them books. Ten little fingers and ten little toes, and three little kisses on the end of your nose.

And then you do the most unnatural thing in the world, and you put your still, tiny, baby into a moses basket with a cold plate under it, and you leave them in the hospital. You give them a love, you try to let them now just how adored they are, and will always be. So, so loved. You didn't want them to suffer or hurt. You're so sorry, Mammy is sorry my darling baby.

And you walk out among happy couples with car seats and newborns just starting their journey, whilst you walk on a completely different one with a memory box and empty arms.

And then you plan their funeral.

And you have to choose how you tell people. You don't know if you will be met with kindness, or judgement. It's not the same as having a stillborn, or a miscarriage, because you chose, you did this to yourself.

And that is just the beginning of a lifetime of what ifs, grieving and why's.

@ThreeLightbulbsGone that was a very sobering and emotional post Lightbulbs, which moved me to tears. I’m sorry you lost your babies, it’s clear you loved them very much 💐
there are no winners in situations like yours, it’s just heartbreaking all round.

Continued...

So anyone judging mother's, families, who TFMR should know that your judgement and disgust is nothing compared to the pain we felt and still feel.

Your judgement says more about you than it ever will about me. And I hope that you never find yourself in the situation I have, facing the decisions I have had to make.

@Lola4321 I’m not sure this worth it but here goes.

Boston Children’s Hospital: “Most children with Down syndrome have some level of intellectual disability ⎯ usually in the mild to moderate range.” www.childrenshospital.org/conditions/down-syndrome

On reading: “Increasing numbers of children with Down syndrome are educated in mainstream primary schools and have access to the same levels of literacy teaching as typically-developing children. Though there is wide variability in the level of reading skill children with Down syndrome achieve, many are able to attain useful levels of literacy (Buckley & Johnson-Glenberg, 2008) and some children acquire reading skills that are in line with, or in advance of, their chronological age (Groen et al., 2006).” senmagazine.co.uk/content/specific-needs/down-syndrome/266/what-does-research-tell-us-about-developing-the-reading-skills-of-children-with-down-syndrome/

Sue Buckley is the leading academic in reading and DS if you’re interested in an evidence based view on this. I suspect you’re not.

On families: “Overall, our data demonstrate that positive themes tend to dominate within modern-day families who have members with DS, although challenges were not insignificant for some” onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.a.37520

No one is suggesting parenting a child with DS is a complete utopia. It has challenges. So does regular parenting. Some challenges are the same, some are different.

three

So very sorry

Thabk you for sharing your story, I'm actually very tearful reading that

💐

They were, and still are, so very loved.

Thank you for your kind words 💐

@ThreeLightbulbsGone I’m so sorry for your losses and thank you for sharing. It’s a really moving articulation of why the right to choose is so important.

Apologies for cross posting.

Thank you for reading it, and for your kindness 💐.

@ThreeLightbulbsGone I am very sorry you lost a son and a daughter. Your post was very powerful. It illustrates perfectly why the decision needs to be left to the mother/parents and their medical team and not dictated by law.

@ThreeLightbulbsGone

I'm so so sorry for your losses