Re pregnancy testing - Is it me....

[theheadgirl]

...or does any one else find it hard, when flicking through the threads on pregnancy, to come across someone who is DESPERATE to rule out every possible abnormality, counting statistics at every turn, planning amnios here, cvs there??
I'm normally a live and live sort of person but I find this so hard to come to terms with. As the mother of a child with DS, I know and ascept that there are those who would terminate rather than have a child like her. Their loss, truly. But my DD, as well as having Downs, also has ASD, which can't be tested for. And in my opinion ASD is far more debilitating than DS. I sometimes feel that there are people who expect their child to be nothing but perfect, and who are in for a sad awakening. And if they only knew, that when the "worst" happens, and their child does have a disability - well, actually its not the worst, there are far worse things. They will love their child anyway.
Sorry, this sounds so intolerant of me, I'm not normally like this. But tonight for some reason, I'm upset by it.

looking back i was so naive when expecting my 2, I wasn't even aware that I could opt out of tests & received a letter saying I was low risk, I don't think I ever really understood what i was low risk for.

When ds2 made his sudden arrival at 28wks my world changed my perspective of disability, testing & termination changed so much.

I am still pro-choice for women but for me personally I would not have testing (beyond scanning).

I am still amazed & saddened by some peoples attitude to disability & termination, I think that will only ever change with education & understanding.

The most offensive thing I have ever had said to me was after I'd had ds2 someone asked if we would have a 3rd, I said I wasn't sure. She nodded with her head towards ds2, my beautiful precious baby & said what even one like that.

omg I can't believe people still say stuff like that out loud

my mum keeps on trying to persuade me to have another child, as she thinks it will be nice for me to have a "normal" child [hmmm]

2 shoes there is just no excuse, its just rude ignorance & guess what his same person is expecting her first baby.

Totalchaos how do you respond to that? I need a witty response for when people say "whats wrong with him" in front of ds2.

nmc, yes, it's a conveyor belt. And there seems to be this assumption that testing, macimum security, what I call pregnancy insurance is what peiople will want. When I was pg with ds1 - I was 27, no relevant history, no antenatal testing at all - I was still asked, rather suggestively, by my gyn's staff whather I wanted the amnio . Not an amnio, the amnio - as if it were as routine as a 12-week scan.

I'm at a bit of a loss to understand the focus on - and seeming terror of - DS as well.

Our neighbour told dh all about her dd's termination for DS because 'she has her career to think about' (OK, whatever, each to their own, but I don't think her mum should have been telling us and I'm sure she wouldn't have wanted her to) when DS1 was stood with DH. I really did think that was crass. Not as crass as your story though mymate. No excuse.

yep crass is the nicest way of putting comments like that Mymatemax and Yurt. Having once made the mistake of trying to reason with my mum over having more kids, I either ignore or tell her I don't want to discuss it.

I am 39 and was asked by my obs secretary when making my antenatal appointment if I wanted a nuchal translucency scan. I was 4 weeks pregnant and really felt that I had to make the decision there and then. I worried about it beforehand and worried afterwards, even having got a "good" result. I think now, that if I were pregnant again ( not happening, btw!) I would opt out of the tests. None of my children are "perfect" but they are perfect to me!

but r3d - what you have posted is true - especially your opening paragraph.

It is to me that society seems hell bent on focusing on down syndrome and almost in a hunting them down kind of attitude - which upsets me when a lot of the information that has been shared with the women taking these tests and making the decision is terribly out of date or misinformed. For me it is from a perspective of living with down syndrome as that is what the majority of posters allude to or discuss.

I can't possibly totally understand what it is like to parent a child with a different disability to dd1 - I can empathise and understand aspects. What i can understand is if a decision to terminate a pregnancy is made from a point of knowledge and a stance of being truly informed - it would not be my decision but I can understand.

The thing is...if I got pregnant again, I would worry about even having an NT baby because J would find it so hard to share me. He hates anyone coming to the house, and has never found it any easier to cope with that I am not his sole property. So having another child AT ALL would be very, very difficult and I would worry about their safety with J around.

But throw into that equation another child with SEN...how the hell would I cope? Simple, I wouldn't.

So, for me, the choice at the moment is to have no more babies, even though I would love more. But if that decision ever changes, I can't honestly say that I'd be fine about the idea of another SEN child, because I don't think it would be fair on anyone.

I would never swap J, and his autism is part of who he is (and the ADHD, and the sensory stuff), but his life IS much harder than that of his peers. I don't know if I'd feel OK about the idea of bringing another child like him into our already difficult lives, only for that child to have a really difficult life too.

So if I ever have another baby and am told during pregnancy that it has severe SEN, I don't know what my choice would be. Being really honest here!

Do you think that part of planning for and wanting a baby is partly the whole planning for the family future thing. Before we have children we all have a vague hopeful path set out - fun, outings, hugs, growing up, weddings granchildren etc. Having a child with severe disability changes that path to some extent. We know that (I presume we are all sn parents!) but for some people it may be hard to imagine that the path goes on - perhaps with a different speed or extra twists and turns but the love and joy is nonethe less. Tests help reasure that the dream is on its way! I'm not sure many people truely think much beyond worrying in a nebulous way! I didnt have tests beyond scans but that was my choice.

I hope in my OP that I didn't give the impression that I felt this was a clearcut test/don't test situation. I certainly don't believe it is, and can easily see why someone would test when they already have a child with SN. But as Eidsvold says its the focus on DS which gets to me. I'm sure each year there are many mothers who test for, and then terminate for Downs without really knowing what it means. And some of these are older mothers who may not easily become pregnant again. And they are mistakenly guided into the idea that it would be better to have no child than one with DS - WTF???
I completely understand there are many reasons why someone would have prenatal testing. But the point of my OP is that I find it upsetting to see the way that some people, who have not given it real thought, throw around their "risk factor" and their assumptions that testing and possible termination has to be done, if their child is not "perfect". It is not the only way.

R3d - if I've upset you by starting this thread, I'm sorry. I hope you know that I'm certainly not condeming those who choose to test. Its the attitude of some that do choose it which I'm focussing on.

Only read OP.

Before I had children I was very much I would have an abortion if there was something wrong with the baby. Then I got pg and the midwife said I was probably miscarrying. I changed in a second and then refused all tests as I knew I wouldn't terminate for anything. I only had scans to see the baby. When I was having my scan with DS2 I was asked why I had refused all tests and I told him it made no difference to us and I hadn't wanted anything invasive. I told him if the baby had something hugely obvious then tell. He then said there was a potential problem (TBH I knew. I could tell by his face.) and I immediately wanted to know the sex and got very protective. My son turned out to be NT but it would have been an honour and a priviledge if he had have had Edward's Syndrome and tbh I almost felt cheated as I had prepared myself for a child with different needs.

What annoys me is when people say it makes no odds and they want to prepare when I suspect they would terminate but don't say it. None of my business but don't lie about it either. Be honest. It is your baby at the end of the day and no one elses.

I can't understand the obsessive focus on Down's syndrome with regard to testing either. Surely most people (and certainly doctors) should know that nowadays people with DS can lead fulfilling and independant lives, which is more than you can say about lots of other disabilities.
I found the attitude in this article very offensive and upsetting. I couldn't believe what I was reading when the woman started going on about her womb being 'contaminated' by carrying a baby with DS. What a horrible thing to think .

I think the reason for the test we had with ds3 were genuinely to prepare- there's no way I could ever terminate, we always said if we had a baby whose SN was incompatible with life we'd still want it to be born at home, as we would get to share those few precious moments with the baby in our own quiet space, where we could keep the memories.

But our feelings on this would be as incomprehensible to manya s the decision to terminate would be to us, and that's OK. As long as poeple justa ccept our decisions as based on how we feel about life and aprenting etc, then we can do the same for other peeple.

I would also want to be prepared, though I wouldn't terminate for DS. My cousin's little boy has DS but unfortunately was born with associated health issues plus an additional syndrome. He didn't properly leave hospital till he was 2.6 and even now needs 24 hour care. I know that's not the case with most babies with DS but she really has been through the mill.

that article was shocking. All those words 'defromed, contamintaed, failure'. Pretty much sums up society's view towards the disabled.
I was once asked about my 'deformed' child. FFS, dd, has cerebral palsy and is physically perfect, she doesn't have 4 heads.

rather ugly reading that article in places, but i do wonder as to this lady's mental health - harping on about contamination sounds very OCDish to me.

What a vile article.

She has obviously created some version of her own reality though as she says the test results told her that the baby was 'seriously affected by Down's'. The test results can tell you the baby has DS, they can't tell you how affected the child will be.

'they're' 'it' 'contaminated' 'deformed'.

Same hospital as ds2 and ds3 were born in btw.

I read the article and don't feel much TBH, it is so far removed from how I feel, so I can't empathise with her emotions.
I'm a nurse, and at the beginning of my career used to work on a gynae ward, and can appreciate how traumatic a late termination is. I accept that people have valid reasons for having them and hope that I was always supportive to the ladies I looked after who chose that route. But sometimes women terminate for a condition (usually Downs) without really knowing the day to day reality of it.

think i will skip reading it.

As I have written on another thread this evening, I am 37 and pregnant (and on mumsnet) for first time.

Decided not to have any tests for many, many reasons, one being that it is impossible to anticipate all that life has in store for me and my child, which I think is the gist of this thread.

I was supported by MW and own family in this decision, but was very distressed by attitiude of in laws and how many people assume I will be having tets due to my age (and apparently their prejudice about disability)

Sought out mumsnet to find some like minded people, overjoyed to say that I have found them.

Sometimes when it's late at night and I can't sleep, I worry about what the future holds (who doesn't!) But in the cold light of day I know I will love my child no matter what, and could not consider a termination.

Wow, good to get that off my chest.

I'm so glad this was mentioned as I do exactly the same .
DS2 was diagnosed prenatally and now I have been through the hell that is testing and am a parent of a child with DS my feelings on these tests are so much clearer yet I still almost torture myself by reading pregnancy threads. I don't know why maybe I'm trying to "save" people .

The things that get to me most are firstly the age obsession and as I was 28 when DS was concieved and a few mums at the group I go to are in their twenties too. I also hate the statistics involved.

Secondly those who have worked with people with DS. I also have worked with children with DS but it's a world away from being a parent to a child with down's.

And lastly the shear terror of the possibility of the child having down's (or any other SN for that matter). Like always it's the fear of the disability first and sadly the child you are having is overlooked. I was totally unprepared for the feelings I have about DS now he is here, they are unique, intense and unlike anything I've felt before nobody can describe these feelings when you are pregnant.

Oh and one more thing talking about the risk of miscarrying a "healthy" child after a cvs or amnio makes me sad. My child is perfectly healthy but it would be ok if I'd have had a miscarriage because he has DS

Of course I realise not everyone may feel this way and have no experience of parenting a child with any other SN so this is just my take on it really,

I guess I can't blame women for feeling this way when, as was said, doctors seem to be on a search and destroy mission when it comes to DS. I can't remember who posted it but there is a link in the antenatal testing bit to a video of a pediatrician talking about testing and DS in a very positive way. I think all pregnant women who test should be given this kind of information.

everyone on this site knows where your coming from. and its because of sites like this that I have kept my sanity.
I must admit I did some of the tests, but only to be prepared not to terminate.
I've just posted on the AIBU thread about a mum who's 8yo has a birth mark which she wants removing as she sees it as unsightly.
I really wanted to put that she doesn't know she is born, having a child with a minor disfigurement is so insignificant compared to the constant worry about our lovely children.
I really want her to get some perspective.