To think you don't see many people with Down's syndrome anymore?

[Neonoen]

When I was a school there was a boy with downs syndome in my class. At secondary there was the first boy and then another one too.

I worked with a man with Downs syndrome at my first job (he taught me how to use the photocopier the first day after I wasted a whole reem of paper ). At the same time there was a woman who travelled on the same bus as me with Down syndrome and another who worked in McDonald's.

Yesterday on the TV they were interviewing that man who has the lead role in a new film (he has downs). DS asked why he spoke like that, I explained and then realised none of my children know what Down's syndrome is or have ever encountered anybody with it. There's no children with downs in their schools, no families with any members who have downs and no businesses that I can think of who employ anybody locally with Down's syndrome.

Other than the SN session at the local pool, I can't remember when I last encountered anybody with downs.

Is it just me? Is it a result of advanced ante natal testing?

In fact thinking of it I'm surprised at the lack of any experience my DC have of people with disabilities.

I really don't want to offend with this and hope I've used the correct terminology.

For those like nothingmore who are decrying late termination for downs as "horrific" let me explain the reality, as someone who has done just that

And yes I've name changed because last time I posted about this I got a barrage of abuse via PM.
-and quite obviously it was distressing so reading this might also be upsetting-

My DS was wanted. Of course most babies in countries where contraception is readily available are, but coming after two miscarriages, falling pregnant with him felt like a blessing.

I sailed through the first 24 weeks, earlier scans were fine and I'd tested as low risk. At that stage I had no idea I was having a boy and my obstetrician at my 26 week appointment asked me if I wanted to know. Full of excitement and with my 5 year old DD with me I hopped on the couch for a scan and my world fell apart.

Other drs were called into the room, a stream of specialists of increasing seniority where they spoke in a language I barely understood, both literally - I was not in my home country - and figuratively as they launched into unfamiliar medical terminology. But I knew.

After more scans and more experts my obstetrician took me into his office and told me I should "go home, where you have a choice". It hadn't sunk in at that point exactly what was meant but I flew home the next day.

I saw a private obstetrician in London. As a"health tourist" there was no option to integrate myself into the NHS so it took some time before I was sat in his waiting room praying to a God I've never believed in that I'd do anything to keep my son. I was driven by raw grief.

The dr was kind but there was no hope. The effects of the trisomy were severe. My DS had fluid on his heart and lungs and this would prevent them developing further. His heart was malformed and could not be corrected by surgery.

I had a choice: continue with the pregnancy knowing that at any time my DS might die and acknowledging the potential serious risk to my health of a preterm labour in such circumstances or terminate.

With enormous sadness we elected for the latter. Mentally I could not cope with the idea that I could go into labour quickly and without warning and that I'd potentially be alone, or worse my two young DC could witness the delivery of their sibling who couldn't survive.

A late stage termination when your baby is so unwell is less about "killing" and more about lack of intervention. The birth plan was discussed in detail but ultimately I was induced in a bereavement room at a specialist fetal medicine unit. Only there would be no medicine or intervention.

No one could tell me if he would be born alive but if he was I would hold him until he wasn't. He'd be loved for those last moments. I would peacefully let him go.

He was 31 weeks, tiny and fragile when he was placed on my chest. He didn't cry or open his eyes. He didn't take a breath. The delivery had been too much for him.

It was without question the sadest and most deveststing day of my life. And yes horrific. But not for the reasons you believe.

(((Namechanger))) that's heart breaking - thank you for posting - sorry you couldn't do it in your name - some people are heartless and cruel

Namechanger
I am very sorry you had abusive PMs. I don't know what else to say really.

I'm so very sorry Namechanger And I'm also sorry someone was inhuman enough to send you that message.

namechanger you have my utmost sympathy and I'm so very sorry for your loss. You made the right choice for the situation you were in and I would have made the same choice.

Namechanger thank you for sharing your story, I'm so sorry you had to go through that. To think that anyone could send abuse to someone for sharing such a personal story is horrific but I can believe it. I have a friend who had a late termination, her child had Down's syndrome but had severe heart problems and was not going to survive. She read a couple of FB posts after the Sally Phillips documentary and it made her realise that there are people out there judging her for her very difficult and personal decision.

I'm so sorry, namechanger. I can't imagine what you must have gone through.

I have a friend who terminated a pregnancy at 6 months on medical advice because her baby had such profound disabilities that she would have been unlikely to survive the birth and wouldn't have lived much beyond it. It was a hideous decision for my friend and the process was awful but she feels strongly that she did the right thing (and I agree). This hasn't stopped people abusing her for it.

When I talk about terminating a DS pregnancy at or near full term as being horrific, I'm thinking of cases in which the baby seems otherwise healthy. I've no idea whether this actually happens in practice but the fact that's it's legal horrifies me.

nothingmore

Thanks for responding - I appreciate it's not always easy when called out on a thread.

My concern when people make blanket statements regarding the horror of late term abortion is that such opinions are formed in a vacuum. Do you really think women with sound mental and physical health, good emotional and financial support networks, suddenly get to post 24 weeks and think "nah pregnancy is not for me"?!

The women that are electing late term abortion - for Downs or anything else - are women who are already in desperate situations: mothers who are worn down by the additional needs of existing children, abusive partners, precarious housing situations, histories of poor mental and it physical health. They're not the Sally Phillips of the world.

To everyone else who gave thanks. It was several years ago now and the pain is no longer raw. My history now makes me sad that as women we judge other women about whom we know so little.

And apologies I realise that is a bit of a derail.

That's heartbreaking namechanger but thank you for sharing.

It also sounds like you dealt with some really good and sensitive doctors. I'm guessing the country you were in had far stricter abortion laws and the doctor who told you to go home was, imo, very kind and possibly fairly brave too.

Nothingmorethanfelines.

It is not lawful to terminate a pregnancy with a baby who hasn't received a diagnosis of substantial risk of physical or mental handicap after 24 weeks gestation.

It isn't lawful for pregnancies with 'otherwise healthy' babies to be terminated post 24 weeks, let alone near to term.

I am horrified by a situation where people who know so little about late term abortion are 'horrified' by events that don't even happen tbh.

christinarosetti Down's Syndrome is as one of the conditions it's lawful to terminate for after 24 weeks. That's Down's Syndrome on its own, not DS + severe disabilities/unfixable heart defects etc.

As I said, I don't know whether in practice this happens, but it's legal.

Downs syndrome is a severe disability nothingmorethanfelines. That's why it's lawful to terminate post 24 weeks.

Gosh, I wish I knew more about Down's Syndrome.

I'm not quite sure what you mean by your last post, nothingmorethanfelines but I hope that you can appreciate how it may come across as utterly tripe and/or highly offensive to women who have had a pregnancy with a Down syndrome baby, whatever the outcome was for them.

I think one of the aims of the recent campaigns was to raise awareness that DS by itself is not a severe disability. Who said it was in the first place? According to wiki DS is associated with mild to moderate learning difficulties.

If you'd read my earlier posts, you'd have seen that I have child with DS. I'm fully aware of the range of disability associated with the condition. I've said a frankly tedious number of times that I'm in favour of choice when it comes to termination before 24 weeks and that the NIPT is a positive development. But surely you can understand why I'm less than thrilled at the idea of terminating a healthy, viable baby late in pregnancy? I also included the caveat that I don't know whether this ever actually happens.

And that's what's so trite and offensive - being 'horrified' or 'less than thrilled' by something that you don't even know whether it happens.

Terminating a pregnancy after 24 weeks is only possible under ground E of the 1967 Abortion Act. This ground does not include 'healthy, viable' babies. So, no it doesn't happen.

franincisco - that's part of the parameters of the current debate, the extent to which Ds is a 'severe disability' or not, so where it sits within current frameworks. Wiki says mild to moderate intellectual disabilies, nor learning disabilities though, which is very different.

One of the issues is that there's no way of knowing pre-natally how severe a baby's disabilities will be.

Terminating a pregnancy after 24 weeks is only possible under ground E of the 1967 Abortion Act. This ground does not include 'healthy, viable' babies

I think we have different ideas of healthy and viable.

As far as I can remember 90% of terminations occur before twelve weeks. There are very few done after 24. I think maybe 100-150 a year, most for very severe issues in the foetus and even more rarely life threatening complications in the mother.
Late term abortion is very rare.

That's good to know, mice. Thank you.

One of the issues is that there's no way of knowing pre-natally how severe a baby's disabilities will be.

This is my issue with the medical model. They bandy around terms such as "life-limiting", "incompatible with life" "no quality of life" "severely disabled" etc when they are not even completely sure themselves.

I am the proud DM of a child that I was told the above about. I decided to keep the baby and she is a fantastic 14 year old who is within "normal" ability. She has some health issues, but is so far off from the very bleak picture that was painted for me at the 20 week scan.

My concern is that many women (or couples) make a decision to end the pregnancy based on the "what might happens" rather than a balanced view (which is rarely given!) and I believe that this is false information, which is not fair.

At the end of the day it is the woman's choice to make, but I would campaign for the correct picture to be given each time rather than the worst case scenario.

But they can't give the 'correct picture' or a 'balanced view' pre natally, franincisco.

All that can be known is that the baby has, for example, Ds and what the range of possible disabilities and outcomes may be. Women make their decision based on this, their current life circumstances, beliefs etc.

In the same way that a baby who gives no concerns pre natally and may even been deemed 'healthy' at birth, may have or go on to develop a disability.

A balanced view should indeed must be given. Informed choice is vital for couples to make a decision. This includes worst case scenarios but should also also include best case/average outcomes etc.
The problem for any medic giving this information is that you just don't know with any real certainty how affected a child will be. You can't paint only the rosy scenario, you have to include the worst as well. A good practitioner does this in a neutral manner, without pressurising the patient/partner either way. Informed consent is vital.
It was my understanding that the phrase 'incompatible with life' wasn't used that much these days?
I have both professional experience (researching developmental disorders) and alas family experience of trisomies. In our case it truly was incompatible with life and the infant in question passed away shortly after birth. Devastating.
We are all shaped by our experiences and yes, this has shaped mine. A termination would be heartbreaking but I'm not sure I could go through with carrying a child to term, giving birth then losing them immediately- that's a catastrophic experience. I hold my hands up and say that I couldn't go through that.

These debates always spark strong feelings, as those with much loved and valued children with various additional needs can feel very upset that people are talking about terminating pregnancies (because the subtext is , let's be honest, 'children like mine.') It's a very difficult, very emotional subject.
My view remains that once born, all babies are valued and families should have way more support than they currently do. But I do believe in a right to bodily autonomy. No one should pressured to terminate when they don't want to and no one should be pressured to carry a pregnancy they don t want to for any reason at all.

Late term abortions are very rare indeed. These are never 'choice' abortions - every one has a heartbreaking background.

That's a great post, mice. I agree completely with all the points you make.

With DS, informed consent really is key. There is still so much outdated information being doled out by midwives and obstetricians, which is why the Down's Syndrome Association launched its "Tell It Right, Start It Right" campaign for better education of HCPs.