New test for antenatal testing for Down Syndrome

[eidsvold]

Just came across this - developed at the hospital where dd1 was born 5 years ago. IN fact today 5 years ago was when we finally got to bring her home.

not sure how I feel

actually do know

[Saker]

Like Davros, I have not posted on this thread and have not read it all in detail, but I have been thinking about it a lot and it has kind of unsettled me. Certainly I would agree that the casual way antenatal testing is sometimes discussed is offensive. I would not agree with termination because a child has special needs and I declined any testing in both my pregnancies. But I feel we have all conveniently forgotten how hard it is to have a child with special needs. We write daily on this board about the problems we face partly due to the additional needs of our children and partly because the system is often a struggle to get through. Surely anyone reading this board with the aim of trying to educate themselves as to the reality of growing up with a child with special needs would be frightened at the prospect. And I agree with Davros on the subject of siblings - my NT Ds1 is a lovely boy and probably more understanding, caring and patient as a result of having Ds2 for a brother. But in other ways he has missed out - he doesn't have the playfellow that you would expect in a sibling just two years younger. There are many things we can't do or can't do as a family because of Ds2. One of the things that would prevent me from choosing to have another child is the effect that it might have on Ds2 who does already have special needs. There is no doubt that he needs a lot of attention and help that a baby would take away from him.

Of course I love both my children more than anything and could not bear the thought of not having them but I can see why, before you have the child and the love that goes with it, the prospect of a handicap can be a scary one.

[Peachy]

Nothing I have found- I yhave looked for sibling support, some starts at an older age, sometimes thinsg are offered but in a poor way (meetings in schooltime are a particular favourite locally for some reason).

What Daxros posted in terms of how her son's ASd affects her dd is very familiar sadly, I relaise ds1 isn't anything like a ssevere, but DS2 has grown up with a child that cant break routines (so no park on way home), lack of sleep due to ds1's sleep problems, the violence, etc. They are close- perhaps because of only 13.5 month age gap- and I am thankful, although I accept that may not be forever. DS2 was my prime concern with ds3's dx, however ds3 is very different to ds1 and it is far easier to be around him than ds1, as he does not have that underlying anger and destructiveness.

DS2 is in fact the most excited about dc4, indeeed he embarassingly anounced it in class news! We haven't discussed the asd chances with him- in his world, all siblings could be ASD. But we have been blessed that ds2 has a naturally aptient loving and kind outlook, and if this child is NT it would be wonderfulfor ds2 as he grows up, perhaps more importantly as a grown up, to share any care responsibilities he might choose to take on.

[eidsvold]

Davros that is a shame as here in Aus they have a siblings network for those who are nt and have siblings with sn - provides them a space to share their experiences - to be able to have social outings/outlets and to draw support from others who understand where they are coming from iyswim.

Is there nothing in the Uk like that??

[Davros]

I have not kept up with this thread or the general airing of these issues on MN. Partly due to limited time but also because I find it confusing. On the one hand I don't see anything wrong with someone deciding they don't want to have a child with any SN that can be detected before birth whether, like me, they already know what is like, or not. But I also agree that there is a lot of misinformation, fear and prejudice. It is not OK for someone to be knowingly insensitive and disrespectful.

When it comes to the issue of how having child with SN affects siblings, that is something I DO know about. It is complicated as most people look at it as a child with SN being included in a family. That is not always the case and, as many of you know, for many years I had ONLY a child with severe SN, we did not have a family as such and that is a VERY different and difficult, heartbreaking experience. Then there is the issue of how many siblings there are, age gaps and whether they are older or younger. These things all make a difference to how the situation affects siblings and a family.

I know two families very well where there is one sibling with SN and one NT. In these two cases the NT child HATES the sibling with SN, not just because of their needs coming first etc (see Coming Down the Mountain) but because they are often verbally and physically threatened. Then I know other families with two siblings close in age where the NT sibling adores their brother/sister, is proud of them and can't do enough for them.......

Having grown up myself with a sister with AS (although it didn't have a name then) I really fear this situation as it definitely spoilt my childhood to some extent and, even now, is the biggest obstacle in my relationship with my mother. Yes, we can say that if AS had been known and my sister had a dx it would have been different, but I don't know so much, maybe a bit, but she still always came first, was always treated as "special" (although we didn't understand that word in today's terms but it amounts to the same thing).

Having had only DS for 7.5 years and then, fairly unexpectedly, having DD, I can see how it already affects her childhood. She does love him deeply and understands him in her own way. But she can't have friends round to play if he is at home, we can't go off to the park etc after school as we have to be back for him and we can't go with him, she can't use the bathroom half the time because he has messed it up, she gets woken up at all hours by him making a noise and many, many more things that happen because of his SN. SHe loves him now, but I don't want to get to the point where she hates him. She will not have any other siblings (but a kitten for Xmas!) and we do not have lots of family nearby. No, she doesn't know any different, it is her reality, but at 4 years old she already knows that her home life and family are different to those of her friends. I do take her to SN activities where siblings are welcome, but they are few and far between. I will continue to do so and hope she starts to bond with some of the other siblings AND the other children with SN, but her support network is minimal.

[eidsvold]

kerioke - there was a gap as I had actually been on holidays and unable to access the internet. I then came back and was looking for a different thread as well as catching up on this thread.

[theheadgirl]

I just want to add with regard to the "how would other siblings cope" issue - the fact that I had other children made me sure I DIDN'T want amnio when pregnant with DD3 and given a high risk of DS. I felt that I would love this child whatever, and also to not want her, due to any SN she may have, meant I was giving my other 2 girls the message that only "perfect" (whatever that is) would do.
The story of your friend Peachy, who developed SN aged 10 and was then rejected is heartbreaking.

[cazzybabs]

eidsvold - thank you for your comments about livign with childrne with SN. And as I have said I never intended to offended as I am sure none us ever do.

Should have of my children have SN I hope I can relay on people here for advice and support.

[Peachy]

'But perhaps if we all informed ourselves more about life with a child with SN, it would prevent misunderstandungs and hurt feelings. '

yes!

exactly that!

And yes OK some threads are technical, or advice from experienced mums are needed (but we have a resource for that off MN)- quite often, esp. on MN SN, a is whats needed, and thatc an come from anyone

[kindersurprise]

Have just read this and the other thread and wanted to say that I think eidsvold was justified in posting her feelings. And I agree that Ambi is being a bit precious about her hurt feelings, take a deep breath hun

My feelings on antenatal testing have gone through a change, mainly from reading the comments on SN threads. When I was pregnant with my DCs I had the recommended tests, which are quite extensive here in Germany. I was not put in the position of having to make a decision as the tests showed no cause for concern. I don't know if I would have the tests now.

Obviously for those of us with no experience with children with SN, it is difficult to imagine how our lives would be if we had a child with DS. I am ashamed to say that I have also had the "what about the other children" thought. After reading some of the very moving posts on this thread, my feelings on the subject are definately undergoing a change.

Would I love my children any less if they were to be involved in an accident or illness and were left disabled? Of course not, so why should I feel differently about bringing such a child into the world. Of course it would be challenging and I do not condemn anyone who decides on a termination but more and more I have realised that every child is a wonderful and precious gift.

Btw, I have just been made aware of the "no SN" button, and wondered about your feelings on the subject. I have always been hesitant to post on SN topics because I didn't want to appear patronising. But perhaps if we all informed ourselves more about life with a child with SN, it would prevent misunderstandungs and hurt feelings.

[Peachy]

The only thing that sticks with me for another ASD child is the fact that ds3 regressed just before the cut off 3 years point, whereas other Mums on my antenatal thread talk anbout being relaxed after 12 weeks, or their triple tests, I don't feel i will have the foggiest what shape our family will take until far further down the line. I suppose I'd rather habve an earlier answer, and be able to plan- that's it though.

Once worked with a kid who aged 10 was involved in a hit and run, very little physical mobility after but full mental capacity- aprents put him in a unit for people with severe learning difficulties, never visited him again- so completely wrong (private_ palcement as well as total rejection.

he was lovely, really lovely parson- we used to chat for ages.... can cever understand what they chose to do

[Graciefer]

Same here, infact so much so that we had visited a genetacist who took blood from DS1 in order to see if his ASD was genetic (fragile X, etc).

The genetacist told us that the results 'could' highlight any risk for future children.

However we told him that would be irrelevant and we were pregnant with DS2 before the results came back.

They say the only thing in life guaranteed are death and taxes, however I like to think our love for our children should be squeezed in there also.

[expatinscotland]

Excellent post, Peachy!

Life has no guarantees, so why do people continue to expect them?

One of my best friends, her brother was perfectly healthy until he was 19. When a car plowed through a queue he was standing in to enter a nightclub and struck him.

He's now 45 with the cognitive abilities of a 3-year-old.

It's not for me to decide whose life is worth living. But if I'd felt differently, I don't think I'd have been able to have kids in good conscience.

No one's perfect, after all.

[GessGalloway]

thanks for explaining kerioke. It was neuros post & a few that followed that I found offensive (came up on a search result) and led to my posting below. I almost posted on the Dec thread then, but didn't.

Ah someone with the same philosophy as me peachy. And interesting point. When we had ds3 we were very aware that he had an incredibly high risk of autism (far higher than most of the 'high' results that a nuchal or triple test can produce). His brother's autism is as you will know particularly severe, so yes I guess we did choose to take the disability if that so happened.

[Peachy]

Quite interested by ' Would I choose to have a child with autism '

The lowest risk factor I have been given for this baby having ASD (given that 2 of its 3 siblings have ASd at difering levels) is 20%, others have suggested higher (nobody really knows)

This baby was deliberately conceived, in that full knowledge. The child that is born is the child I chose to have. I will consider myself blessed to have this child.

The people I feel sorry for onMN are those whose children face enormous fights for life, or are facing aprticular hurdles, or people whose child dies , or who cannot have children at all.

I do not feel sorry for anyone purely based on their having a child with sn.

I genuine;y believe that if you choose to have unprotected sex and a baby, then you choose to accept that baby regardless of medical conditions. I believe in termination for other reasons, but not sn compatible with life- and certainly not ever late termination. I know that will offend, but it is my belief and lately everyone else seems willing to post their opposing ones so its about time I said it

[kerioke]

i see what you mean... they are not part of the special need, but the special need is a part of them, the individual... i do understand that and again perhaps i was incorrect in reading the post! it is hard to gain incite from reading text as there is little real emotion and things can easily be taken the wrong way.. or read the wrong way in my case!

[heartinthecountry]

Kerioke - I don't think (and am happy to be corrected) eidsvold or anyone else would have a problem with referring to "a child with down's" it is when people say "a down's child" or even, shockingly "a down's".

They are children first and foremost, the down's syndrome comes second.

Similary I always refer to my daughter as a 'child with disabilities' not 'a disabled child'. Or at least I try to.

[kerioke]

i know i am not welcome here, but after talking to my dp last night about what happened on here and due dec yesterday i wanted to come over and appologise in person to eidsvold... especially as i was one of the people who responded to her post on the december thread.

i had thought that you were talking about one of our ladies who had to decide about testing earlier on and who put herself through a rough time of it back then and i felt defensive, i now think (after reading properly, rather than scanning) that you were actually referring to Neuro's comments about a tv programme she and others had watched...

whatever the reason i am sorry for my comments yesterday, for two reasons...

firstly i am sorry that i didnt read the info properly and jumped to defensive conclusions and retorted in the way i did, and secondly i am sorry for referring to 'a child with downs'. as i said in my post on dec board, i have a neice and my partner a nephew and neither us, their mothers or any of our families feel offended by using this phrase to strangers... they have names, shannon and george and wonderful personalities, they are special needs and you can tell by looking at them and their mums have at times referred to 'children with downs' or 'because shannon has downs....' and i guess it never occured to me my choice of words would offend you. again i am sorry.

i did feel we were jumped upon and i didnt understand why you had left it so long to say your piece, but again on reading properly and discovering your reason for not posting sooner was actually that you couldnt find the board, i do now understand.

so once again i am sorry for the way i was yesterday and in future not only will i look into things prior to responding i will also no longer assume that the way my family regard our special angels, is not neccassarily the way others regard theirs. i hope i havent caused nay offence with this post as it is trully meant as an appology.

[TotalChaos]

[hmmm]. So it's OK for ladies from AN threads to post on here, but not for Eidsvold to post on their thread. Respect cuts both ways. Late termination of pregnancy is a very serious issue. I think Eidsvold's post was giving a remarkably balanced view given the circumstances.

[2shoes]

i have just seen this. I am appalled that someone can come on here and attack a member of the sn board in this way.

[GessGalloway]

I don't think the December thread realise their remarks show up in search results.... even the new ones.

[GessGalloway]

eidsvold you have the patience of a saint.

Friend of mine adopted a child with SN (already having a biological dd with SN) so of course people choose to have children with SN. She's no martyr either. I suppose the fact that none of us gave our children up for adoption along with the dx (whether that came ante or post natally) suggests that in some way we chose to have a child with SN.

[eidsvold]

cazzybabs - actually some people do choose to have a child with special needs. You in fact posted about would it be fair on your dds. So I feel I responded to that with information.

There was then the disparaging remark made about those who chose to continue their pregnancy and how they harbour animosity towards those who did not.

Then of course to add to it being referred to as egocentric and compared to militant breastfeeders was a bit OTT. How we are quick to offend and how thoughtless we are. How unsupportive of women SOME women are. How the 'sisterhood' is let down by other sisters.

A bit OTT to refer to women who have posted on this special needs thread - some of them have gone out of their way to help people to support them to search for and provide information on a number of topics and then to be labelled as above would be a slap in the face. Making them very unlikely to want to help in the future.

In fact my original post just said I felt sad at this report. I am also saddened when I read that more children with down syndrome were aborted than born the year my dd1 was born.

I posted as I was sad to see someone think it was hard to have a child with down syndrome

that is why I posted - to share my situation and what information is out there for women HOWEVER in trying to address issues that were raised I am attacked and blamed for all sorts of things including a high blood pressure reading at an antenatal appt

I also referred back to the idea of testing as was the original subject of this sn thread. I also asked as question as to why people are afraid of Down syndrome to which no one could reply instead to attack me.

As to the educating - I am obviously doing a crap job because not matter how many times TC, geekgrrl, headgirl, myself and others say it is not appropriate people still refer to children with Down Syndrome as a DS child.

[cazzybabs]

I am sorry if we offended you (well I am) although I am a little confused what has offended you. As far as I can read, and I am willing to be corrected (but please don't shout at me) there is nothing offensive about any person with or without special needs. The only thing that was slightly offensive to you (plural) as about the fact you are extremly passonate about your childrne (and eidsvold I have seen photos of your dd and I think she is beautiful).
I am sure having a child with special needs is not something you would choose - would you change your child - No you love them for who they are. as I said on the dec thread I didn't have any blood tests - because I knew I wouldn't have an abortion. But I did have the 20 week scan in case of any health problems that would need to be looked at during birth. hNow there is every chance my child could be born with something that cannot be picked up on a 20 week scan - autism springs to mind. Would I choose to have a child with autism - no, will I love my baby/child yes.

It is part of your job to educate people like me on special needs. The way to do that is by telling people why they have offended you else they will keep on doing it. I think of Thomcat and she is very very patient at explainning to people about her daughter endlessly it seems to me. yes you shouldn't need to and I am sorry that you have to (a fault of our society).

And again I am sorry if I have offended you it is not my intenion at all!

[GessGalloway]

Dear God.

I'm failing to see the offence in a very carefully worded & moving post.

For the record Ambi I was shaking with anger after reading the Dec thread a week or so ago and I don't even have a child with DS (one who is more affected by his disibility than many people who have DS, and whose condition cannot be detected antenatally).

Some of the posts on the thread did rather suggest ignorance surrounding SN. I can understand why eidsvold posted.

[expatinscotland]

She posted to share her experiences of Down's Syndrome, which have been mostly positive, to give that perspective on this condition.