Doing an interview about testing / DS - do you want to add anything?

[Thomcat]

I'm doing an interview for a parenting mag. It's all about DS and testing etc.

I just thought that if any mums had a strong opinion, a good point, anything they would like me to add in the interview this would be a good way to do it????

I'm happy just to crack on with it but just thought this might be a good opportunity to rally together with our thoughts and get them across as one voice iykwim?

Anyway, just an idea. If you do have points, particular things you'd like the rest of the world to know I'd be happy to voice them as part of the interview.

TC x

No, anyone??? Was it a rubbish idea then?

can you give more details as to what you want thomcat- I'm fairly new here as I'm sure are others...

Tc, I am sure that you would cover it from "our" angle. I will have a think, try to put it together in some sort of intelligible form and either post or email you.
When do you need it?

You could use our anecdote - hard marker but I did not have an amnio - wouldn't change the outcome( pregnancy 1). Pregnant with no2 - very soft marker found via ultrasound and again we refused any further testing - not change this outcome so why bother. ( our thoughts)

Interesting to compare UK GP and Aus GP - UK GPs wanted to send me for every test under the sun from a fetal cardiac scan to blood tests to amnios etc, This while I had dd in the consulting room with me - looking very much like a well cared for and much wanted babe!! Aus GP - very much - as little or as much as we wanted - very patient directed. Even after they found the spot in the heart - hopsital was very patient directed.

I have a friend who did her masters on the idea of 'informed consent' during pregnancy with regards to a number of things but especially antenatal testing. She found that where families/parents had experiences with DOwn syndrome they were more likely to keep the baby after an antenatal diagnosis than those parents who had never really encountered someone with DS. I can't remember the exact figures. Would have to go back and look at her thesis she sent me.

My only concern is with testing that becomes more and more sophisticated and less invasive - there is a test being developed here in Aus that involves early pregnancy and taking cells from the cervix to test for the presence of DS - makes it even easier to terminate and what is the outcome for children like our dd's - they become a rarity... how less rich society is if we eliminate everyone who may be 'different' ( use that term loosely)

Sad to learn just before we left the UK - that the year dd was born was the first year more babes with DS were terminated than were born

not sure if any of this is what you wanted - more a ramble - from a woman with no morning coffee in her yet.... so take any points you think relevant or email me if you want me to add anything else.

Hope this helps.

Pikiefish - thanks - it's just an article on testing yo see if your unborn child has DS and all that then comes with that. I know that people have strong views on this and I thought I'd see if anyone had anything that should be said out loud in the article.

Dingle - great, thanks. I need it for tomorrow, only confirmed it was happening this afternoon.

Edisvold - spot on. Your views and mine on wiping out children with DS is exactly the same. will note down the things you have said and bring them up. Thank you. xx

good post eidsvold. Also backs up a conversation I had with someone who teaches in a special school. She said that they had far mor autistic children and far fewer children with Down's than they had a few years ago. Being a bit dozy I asked if that's becuase children with Down's fared better with inclusion. She said no- she thought fewer were being born.

Ref mears post earlier today - you could mention the lack of support for those 1 in 100 who have a m/c following amnio.
Also the other poster today who thought she had declined screening test but it was done regardless - might be worth checking general policy on that one.
Effects of increasing maternal age on the debate?

Thank you cab, that's great.
Jimjams, Edisvold , hope you don't mind me referring to you as friends when I bring up your comments, saying a woman I've never met on a chat room called jimJams said - people just won't understand!

Thomcat have just remembered that you're Lottie's mum: Try and think of the very worst questions that they could ask you and how you intend to answer. Also keep in mind a few succinct points that you want to get across and repeat if necessary very slowly (in case the reporter's shorthand isn't too hot).
In case he or she is not very bright/ not well researched/ lazy it won't do any harm just to hand her either some written notes or a pre-written article being as factual as possible but with the odd quote from yourself.
HTH - used to be a journalist so I know how many of them are c**p.

Oh and ask her to e-mail you a copy of what she intends to print - especially if you are at all concerned about the 'slant' of her questions.

My one worry is why Camerons DS went undetected through the Nuchal scan they made my risk 1:577 which was bad enough but i then had a 16 week and 20 week scan and nothing was picked up in them either! In fact my 20 weeks scan reduced my risk to 1:1100. I am sorry but i have lost a lot of faith in the scanning system.

It isn't that it would have made any difference to me having Cameron because it wouldn't of but if it had of been detected we would have been far more prepared.

I would never have had an amnio as it seems to carry hiogher risks that the risk of having a baby with DS so that would have been a no go area for me.

Hope you get all the material you need for this interview, Good luck.

Love Debbie and Cameron 6+1 weeks xxxx

you can tell them I was 33 when dd was born and am 36 today - so will be 36 when no2 is born. We basically decided that we could cope with ds and so amnio was not even an issue in terms of the risk of miscarriage iykwim.

Not sure this is what you want, but I have said it on MN before. When I had DD last year I had all the tests going as I DID NOT want another child with special needs if I could knowingly not have one. I feel that is very valid as I know very well what its like to have a child with SN and all that involves. I adore DS but personally I don't adore his ASD and would love to know him without it. I don't know 100% that DD is OK as ASD can't be detected pre-natally. I absolutely support anyone who doesn't want testing as they would not terminate and NEVER assume that anyone with a child with DS only had them because they didn't know and, if I feel its OK to ask, I have asked friends if they knew before having the baby and NOT assumed they didn't. I think not already having NT children can REALLY affect this decision too, I didn't read that article that was posted the other day as didn't have time but checked very quickly that the woman who wrote it alrelady had two NT children, a very different experience to only have children with SN althogh, as we've seen on a couple of TV progs recently, some people do choose this.

oh Davros just reminded me of something - after dd was born - whenever we encountered medical professionals - one of the first questions they asked was whether ornot we knew before the birth that dd had ds. Seem surprised when we say yes...the inference in the question is that we had dd not knowing about the ds...

i'm rambling !!

TC - not sure if this will be posted in time for you or if its useful. But one massive problem I hve with testing is this (I'll try and explain coherently!) -

It is highly focused on testing for DS (although I know some areas do blood tests which do check for other syndromes)this gives parents the impression that DS is the worst thing that could happen. Aside from any feelings one might have about whether DS is a good/bad thing and the whole issue about what this says about DS/society which I am sure you are talking about, I feel this is dangerous in another way - I think that in many ways having antenatal tests makes parents less prepared to have a child with SN not more, because as soon as it comes back negative/low chance for DS they don't feel they have to even consider that their child may have a different kind of SN. I have lost count of the number of people who have had the nuchal fold or other tests, it comes back negative/low possibility and they say "so everything is fine" and I want to either scream very loudly or say very quietly "but you don't know that. There are so many other things that cannot be tested for or that have not been tested for that could happen to your child, and you should be thinking about that."

In our case, if I had had a high chance of DS, tbh I may well have terminated. As it turns out I have a dd who is probably less able than most children with DS, which is kind of ironic. And I feel I was totally unprepared for that because as far as I was concerned, she didn't have DS so she was fine. That is the impression these tests give you and it is dangerous.

Now, I love my dd dearly and knowing what I know now, I would have no problem with having a child with DS. So I suppose that brings up another point - how many of the parents who terminated a child with DS would infact have found that it wasn't the awful thing they thought it would be?

Sorry, I have gone on a bit of a rant here, as you say, it is something people feel very strongly about. I hope it makes sense.

Down symdrome doesnt scare me. What scares me is if i have a baby with a 'serious' health problem which would have an big impact on its life. i have declined testing for DS, but am having fetal cardiac scans, and altho i know some people with DS have heart problems, the DS part doesnt worry me IYKWIM.

In my family there are 3 children with cerebal palsy, that cant be detected before birth, and tbh i dont think it makes much difference. They are still the same children we have always known and loved.

well just a small snippet from me

I had genetic counselling because my sister had cystic fibrosis, that is recessive genetic. I was not a carrioer

I had no tests thsat showed I was high risk when i was preg with dd. Although i was only 21, i think this makes a differnce. All scans were fine.

As you kniw, my dd has special needs, undiagnosed and she is 5.

She is still perfect. Of course I care she has special needs, it is a bind. I agree with davros in that I could not cope with another specia needs child. I wcouldnt have coped with a child with CF, thats why I went to genetic counselling to avoid that. As it is I have still had a child with special needs, very loved amnd wanted but unexpected SN all the same.

We have decided to not have anymore children because of the SN matters. I know this is a bit off topic but alot of rare syndromes are just f;ukes, cant be picked up antenatally, nor for years after. I feel we live in a cruel world where everyone has to be perfect otherwise they are terminated or ostracised tbh

andf for the record if had showed i was having a child with ds i woulnt have aborted

I just typed out a long post and lost it, hate that so much!

Anyway the jist of it was that Edisvold I used you UK / Aus experience, Cab, I spoke about lack of support for mothers who miscarry due to the amnio they were given & JimJams I mentioned the conversation you had with the SN teacher.

Heartinthecountry, didn't see your post in time but that was exactly the road I went down.

I'll have a chance to review the interview on Monday so I may cut & paste it here first thing monday am so that if you feel it misses out very relevant, important facts etc you can let me know. Bearing in mind that I want this to be supportive of testing but want to get across that there are so many other things that can and do happen, that old the only guarantee is that there are no guarantees. I want women / parernts to feel that just because they are offered a termination on a plate it isn't the only option. I want them to know the worst case scenario they are told of really isn't the only turn out, that people with DS are still people who live fulfilled lives, give a lot back to society etc etc. That DS isn't the only thing that could happen to them it's just one of the few things that can be detected. I want them to be offered contact numbers of parents who child has DS so that the decision they end of making is their decision, not a doctors. That just becasue their baby has DS it doesn't have to be the end of anyones life, iykwim.

Here it is. I want to change / add a few bits as it's not as ..... strong as I would have liked. I thought it would be a bit more .... I don't know... serious.
Anyway this is the initial draft;

thomcat , 33, is a PR manager from Middlesex. Her daughter Lottie, three, has Down's syndrome.
'I had a dream pregnancy and felt very healthy and positive. My blood tests indicated that I was in a low-risk category for Down's syndrome, so I didn't push for any further tests. I loved being pregnant and didn't want to spoil it by worrying about tests, let alone run the risk of miscarrying after an amniocentesis. There can't be a woman in the world who doesn't worry about her baby's health, but I wasn't unduly concerned.

I had a wonderful active birth, but when I saw Lottie I instantly knew she had Down's syndrome. The paediatrician confirmed what I suspected. I had a few tears, mostly out of shock. Around one in three children with Down's has a heart defect, so the next day Lottie had a scan. I was so worried, but the doctor said her heart was healthy and we've never looked back.

Although it took a day or so to get my head around Lottie's Down's syndrome, I've never regretted not having antenatal tests. If I'd found out in advance I'd have spent my whole pregnancy worrying. There would have been no question of me ending the pregnancy ñ as soon as I felt the baby move I bonded with her.

Three years on, life with Lottie is fantastic. She's not walking yet and she hasn't got the level of speech of a typical three-year-old, but she's a little chatterbox and makes herself understood. She makes us roar with laughter every single day. She has no health problems, and we get an amazing amount of support from speech, occupational and physical therapists and our health visitor. Lottie charms the pants off everyone she meets.

My husband and I want another baby, but I won't be bullied into having antenatal tests in my next pregnancy. Whatever happens, the child will be loved very much. It's terrible that mothers are pushed into having tests and then offered a termination if the baby has any abnormalities. I wish that anyone who was worried about having a special needs child could come and see Lottie ñ life is so much richer with her in it.'

It's good TC - bit of a shame it doesn't cover some of the more 'heavyweight' points you made, as you say. I think, though, unfortunately, that is probably inevitable for most of the parenting/pregnancy mags.

BTW - I work in PR too. Are you in-house or agency? {nosey emoticon!].

Yeah they have to be careful not to upset / worry any preganant women reading it so iu guess they ahve to keep it as light as poss. Anyway my interview is apart of a whole feature on it so.... at least they wanted as p[ositive story and thought to include the side of a women with a child with DS etc.
I'd love them to be a bit heavier and she is going to go back and change a few bits.

TC this is lovely, very positive message. I did something similar in Pregnancy & Birth about 4 years ago and found it very difficult to get 'harder' points across - I compromised with correcting every 'risk of DS' to 'chance of..' and picking a nice pic. It was pinned up on the notice board at nursery and people still talk about it - so it is so worth doing. Can you tell us which mag?

Thanks sinclair. If it goes ahead and is printed yes I'll tell you which mag.