I find it sooo hard when people talk about nuchals and CVS's and amnios etc

[TeeCee]

I really try not to. I know some people need to know. Blimey with DD2 I found myself having tests, something I had never thought I'd do and found very uncomfortable, but a situation I found myself in all the same. I went through hell with all of that. Cried buckets, felt like shit, felt such a terrible person. It was the hardest thing int he world when I realised DP desperatley had to know.

I just feel really, really uncomforatble when people talk about checking the nuchal fold and booking in for a CVS etc. I'm sure they have thought loads about why they are testing etc and have made an informed decision about why and what they'll do and why they would do whatt hey would do etc, but sometimes the matter of fact way these appointments are discussed, it feels like they are discussing nothing more important than a hairdressing or pedicure appointment.

All these people that have a CVS or an amnio booked, are they all doing it becasue they need to know either way or are they doing because they would all abort if the child had Down's? I know you can't answer that, and it's none of my business anyway etc etc etc, but it's what goes through my head everytime.

How can I be a mother to a child with Down's and not be slightly pained by all the seemingly casual talk of CVS's etc?

Sorry, just needed to offload as feel quite sad about it all. It's the hormones, ignore me if you like, I won't mind!

Fubsy, they did switch to doing Ponseti at the Royal London, at least partly because they were so impressed with DS2's feet! (I kept in touch with Di Coggings, the head of children's physiotherapy there, and took DS2 back to see her a couple of times after his ponseti treatment just so she could see how he was getting on.)

ejb, what a difficult situation to be in. Wishing you all the best for your pregnancy.

One thing I've learned about testing is how little it can detect so in a way maybe people who end up with a sn child are less prepared? I dunno. in the olden days you got waht you got.
I worried in all 4 pregnancies but didn't have any tests. What if? How would I cope? Number 4's cerebral palsy was a birth accident so tests would have shown a healthy baby. Tests also wouldn't have shown that number 1 would be a psycho teenager who has run away and broken my heart.
Statistics are also hard to understand. When preg with no 4 I decided to have a natural birth after 3 c-sections. Looked up all the stats for rupture. they vared from 1 in 200 to 1 in 50 but what does that actually mean to me, as an individual? Thats whats so tricky. If a test gives a statistic (and many of them aren't so accurate).
Ebj, I don't disrespect you at all for testing, please don't think I was. Its such an individual choice. You've already walked the sn path. I don't know what I'd do if I was pregnant again. I don't know if I could cope with another CP child but thats a condition that can't be tested for. But I wouldn't terminate for CP. But other mums would. Its such aheart rending decision
What is UBT?
I think what would make these decisons easier is if people with disabilities were more part of every day society instead of not going to toddler groups or being in special schools. Its fear of the unknown mainly. Before I had DD I never met anyone with a disabled child yet there are hundreds of thousands. Now, I meet many with all sorts of things. Where were they all? Many testing decisions are made through fear of the unknown. I know much of my grief in the early weeks with C was to do with the unknown. I had never met anyone with CP. If I had of done, then those early weeks wouldn't have been so awful.
But I can't help feeling that testing is a type of eugenics when done on a widescale, especially since all the leaflets are so negative. It seems to be going hand in hand with the euthanasia thing. Most people are so afraid of disability that they announce that they'd rather be dead than disabled. Often without knowing anythng about disability or having ever met a disabled person. I have MS, am in a wheelchair yet lead a normal life, much to many people's surprise.
Its an emotive issue, especially when pregnant!
I used to avoid Mothercare with DD in case I upset anyone but now I realise we should be there as a sign saying 'look, it happens sometimes and its not as bad as you fear and you can cope and hey, she's gorgeous anyhow'.
I dunno what I'm trying to say now1 Gone into burble mode. But I do wish I could visit new mums who's kids have just been dx with CP and help them. I wish I'd had that at DD's birth. Someone to show its not the end of the world and life goes on and yes, you can be happy with your CP child. but in NICU I was all alone like a pariah.

ta for replies x

I don't really feel I've much in common and could get much support on pregnancy / cvs type threads. I feel like writing why are you all so paranoid about Down's? I wish that was my worry - I'd gladly take a baby with Down's any day.

UBT stands for unbalanced translocation. My eggs are a bit scrambled! Some of the short arm of chromosome 5 has swapped over with long arm of chromosome 14. I am not affected by it other than in this reproductive sense. My dd inherited my dodgy 5 chromosome with the end of 14 stuck to it and my 'normal' 14 chromosome and is 'unbalanced' as opposed to my 'balanced'. She has cri du chat syndrome (thats the missing 5p)and trisomy 14q which is so v rare and not really seen in living people. She is an absolute delight and I am glad that I didn't know any of this before she was born. I wouldn't swap her for the world.

If the UBT was the other way round (missing 14, extra 5) that would certainly be incompatible with life - cos of the big chunk of genetic material missing. There's not that many deletions - certainly of that size - that are 'compatible with life'.

But thinking positive - its 50/50 whether this has been passed on in any way this time. Odds must surely be in my favour now? Whichever way - I don't want to go through this ever again. Sterilisation beckons!

Bobalinga - I think that's a great idea re talking to new moms. Does your NICU have a parent support group you can contact? Sorry to hear about yr son.

ejb, thanks for that.

I don't think I could say anything that will be of any earthly help, except that personally I can understand why you're going for CVS, and I will be keeping everything crossed for you and praying (if that's not too presumptuous) that your baby hangs on.

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she said you wouldn't have had to go through with tallipes??????????? In front of your lovely little boy? I think I would have hit angry in 3 seconds. How did you manage to not lamp her? I'm really shocked!

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I don't know- if I try and tackle those sorts of comments I end up getting upset, so sometimes better to blank out I think.

your mum sounds a right charmer by the way! Have you managed to get this toxic woman out of your life?

TC I have read your first message and nothing else and so I am sorry if this is the wrong response.

I refused all testing with both my children, by the time they could tell if there was a problem - as far as I was concerned it was too late, the baby was mine - and that came with anything that I was given with that. There are so many things that can't be screened for - I feel really uncomfortable about the screening thing! Not wording this well.

But - would like to add my support as a parent with 2 NT children that I find all the talk of screening etc upsetting - because it feels like the parent is already placing conditional love on the child.

MummyPossum - I'm in shock about that comment too! (It's Dinosaur, btw.) I think I would have lamped anyone who said that to me about my DS2 .

Perigrine, there is no right or wrong response really. It's such a complicated one this testing business. It absolutley needs to exist for so many reason,s so many posts on this thread and on mumsnet in general have shown that. KatyH istantly springs to mind. I'm so pleased she had a test and was able to make a decision that felt right with her and her DH. Just one example of why it's so good that we can detect some things in the womb. However it's also really hard. It can be so unnessercily worrying, and I hate the culling aspect that exists with it. As a mother of a DD with DS and DS being one of the things that people panic about so much and so many people terminate for this reason. I find that so hard. I really do. How could I not? But I don't blame women for testing, I don't. I just wish ....., I just wish that there weren't so many people terminating pregnancies for nonlife threatening conditions. Can't help it, just the way I feel.

I guess it hurts on a personal level when it shouldn't really as I feel so protective and defensive because of my DD. I can't get my head round it feeling like people are saying 'ohhh no, I couldn't have a child with DS' when here she is, wonderful, perfect, full of life. What are thatey saying, what does that mean when people with DS are so.... normal, so, just ... what's so wrong with someone with DS, what's not to cope with, what's not too love. I find it so hard not to take it personally, mad as that may seem to others.

(I do actually understand not wanting to, feeling able to, take on another child with SN when you already have a child with SN, I find that easier to get my head round. It may still feel a bit uncomfortable but I can begin to understand that a bit more)

Hah! JimJams, you have inspired me (formerly MP here, now with 'feck off' frown across her furry brow, baby bear under one arm and a pot of honey under the other). I know to be "mumAnything" on MNet is deemed deeply uncool but I am comfortable with my un-hipp-ness
My mum would be a whole other thread and frankly she's not worth that sort of attention
Dino/Mrs Thingy (see, I'm not cool, I don't understand the inference of your new moniker ) - does to "lamp" someone mean to pick up one of those pseudo Ming pots so prevalent in the homes where NCT mums & babies meets are, complete with frilly shade, and whang one's annoying interlocutor over the head so they are thus wearing said frilly shade in a becoming manner around their neck? If so, sounds like a great idea .....

OMG possum - I would have let her have it. Itis not about growing a thicker skin - I firmly believe in challenging comments like that - otherwise ignorance persists. I feel such a responsibility to 'educate' people about down syndrome......

I am a new parent support person for our Down Syndrome Association here in Queensland and my role includes:

speaking to hospital staff about down syndrome - the facts about ds, how to respond to a family who have have had a babe with down syndrome ( and no asking did you know beforehand is NOT the way to start!! )

supporting and talking with women who have had an antenatal diagnosis - hard as some want to terminate and our association has a philosophy that ds alone is not a reason to terminate BUT you need to be sensitive as to where that family is at

supporting families who have had a little one with down syndrome.

Have also passed on new parent kits to local hospitals including ones for parents with a prenatal diagnosis.

Think it is such an important role.

PMSL Grizzly. I think its best to avoid the NCT crowd. I tried to host bumps and babies with ds3 (thought I needed to make some baby friends) and had to cancel after the first one as my grin was too fixed. One of the visitors was an LSA for children with SN and was about to launch into a "SN kids are weird and dreadful" rant until I said "Oh my how intersting my eldest son is autistic".

Oh well done on this eidsvold! Of course we all know that many terminations for DS are undertaken from the standpoint of fear. If they see the reality of a child with Downs, I'm sure that termination wouldn't then be the choice of many. I'm sure talking to your helps many people.
I worked with someone who considered she was "old" to have her first baby at 38(!), and told me she felt terrible to admit to me that she'd had an amnio, and if LO had Downs she thinks she would have terminated. Her daughter turned out to be NT. I told her I didn't judge her, but I do believe, knowing how much she loved her DD, that if she'd terminated, was childless, and then subsequently had met my DD3, she'd have felt nothing but regret...... A child with SN really focuses the mind about what it is we want from motherhood. My DD3, and DD1 and DD2 are everything I wanted, and more.

MotherGB, I'm liking the new name, and new outlook. You will go far.....

the biggest thing I took away from my pregnancy and the birth of dd1 was no matter how 'planned' things are and the images everyone pushes on you - things can change in a heartbeat. I think I even lowered my expectations. You know - people say oh I really want a boy/girl, others say as long as the baby is healthy..... well with dd1 - we knew she was not going to be healthy but she was ours nevertheless.

The other thing I took away with me - was to roll with it... I was adamant I did not want a c-section and was very pleased when fetal cardiologist and obstetrician said no real reason why I would need one. ( I am a big wuss when it comes to needles etc - had never had any sort of surgery etc and so on.)

Then the day dd1 was born - having an ultrasound at 9.30am, dd1 born by c-section by 11.08am!!!! The midwife that took us upstairs to start some monitoring of dd1 said to me - you will have this baby today... in my mind that meant - induce me, send me home, wait for contractions..... even as they were wheeling me into surgery, I can remember thinking - I can't have a baby today I have to go to the bank, haven't finished packing my hospital bag, have to go shopping etc.

Then of course with dd1's postnatal and pre cardiac surgery - so much was out of our hands. You just learnt to go along with what needed to be done. I also learnt that I just needed to focus on what worked for me and my family. Something that I held on to with dd2 - might not work for you - but it works for me and mine and that is all that matters. No point in beating yourself up about it - can't change it, just have to accept it and move on.

Oh jj - i am thinking of joining a playgroup for dd2 to give her interaction but am not sure I want the interaction iyswim.

I've tried NCT and toddler groups with DD but many mums are looking for playdates and DD isn't 'chum' material.
Thats what I find hard. How could anyone not want to play with my daughter even if she has CP? I hurt for her.
But the 'I couldn't cope' comments make me seethe. Its not like you get a choice! I just ask them would they put their current child up for adoption if they become brain dmaaged or would they cope.

MotherGrizzlyBear - at the Ming lamp - and love the new name!

I am being very girly with this name. Philip Glenister is Gene Hunt in Life on Mars. He's just been on Soccer A.M. (swoon).

Bobalinga - have you thought of becoming a Portage worker? It would be a way of getting to meet and support other parents with young SN children, and your experience would be very helpful.

Here portage doesn't start till nearly 2 cos there's no funding for the under 2's. Terrible isn't it.
We're trying to get a SN toddler group off the ground in conjunction with Cerebral Palsy Plus (local Bristol based charity). I've called its 'Wit's End' and keep sticking posters up in hospitals, doctors etc.
Hopefully that will get going so if you know anyone with a SN under 5 in Bristol, let them know

Good luck with that, sounds really good!