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!

It's horrific isn't it JJ. 35 weeks Makes me feel like I'm going to gag just thinking about it, must tune out and concentrate on the thought of you and your guinea pigs instead.

actually teecee, I should have been more sensitive since I have been acting really touchy/hormonal with dh over the same issue, so no excuse really.

I don't even want to think about the 35 week termination story, have no words.

Please don't worry Laksa, xx

I am stunned at that story, equally stunned that over 90% of women carrying DS babies chose to terminate.

But in some ways Im not surprised. Working with children with SN, Ive met some strange parents. When i started, I worked in the North East, and the parents were lovely, and all the children seemed loved too. But when I moved to London, I did meet a lot of parents who seemed so angry - with their child, with the system which allowed them to have such a child, and with me for not curing their child. Husbands and boyfriends left because the children were never going to play football, children were pushed into MS school as their parents refused to entertain those dreadful SN schools. I met so many parents who really seemed to struggle to love their children.

Ive worked where I am now for nearly 7 years, and it still amazes me when I hear people who are happy to have their children in SN schools. Obviously there are still the families who feel let down by the system, and goodness knows it does let them down, but so many more are just philosophical, and love their children for who they are. What I dont see is the urge to push the child to be as perfect as possible that I saw in London - parents pushing for surgery in spite of the surgeons advising them not to.

Just read that back, and it sounds terribly critical. Its not meant to hurt - I trained in counselling while I was there in an attempt to help some of these families. Maybe it was just the lack of resources that did it - so many of them were waiting for rehousing, that it sometimes became the be all and end all of their lives. My asking them to do a physio programme ws probably just the last straw.

Fubsy -speaking locally SN schools aren't always offered. When ds1 was 4 I asked the ed psych if we could look at the 3 obvious schools you may be able to think of and she said no. It was the unit (which we didn't want) or mainstream. And as you know which school my son is in now (which also happens to be perfect for him), I'm sure you'll realise what a dreadful mistake mainstream was for him.

Also there's the gorwing realisation. When ds1 was 2 we were told he "definitely" wasn;t autistic, that he had mild language delay and would catch up. At 3 we were told he was "somewhere on the autistic spectrum" (kind of sussed that one out by then ), and then eventually it settled on severe autism. If I'd been told at 2 that ds1 would end up in the school he is in now I would have been utterly horrifed, because I was operating on the "mild language delay" diagnosis- his school would have been some dredfully frightening place full of children nothing like him. Whereas by the time he was 5 , and having done 5 terms at mainstream I went to look around and instantly felt the warmth of the place and realised that finally he was somewhere where people understood him.

Fubsy I know where you care coming from
I spoke to a friend for the first time in years the other day, she is a SALT and she is hopefully going to assess my ds3 as the final puzzle pieve for his ASD dx. Anyway she was surprised we are fighting for him to have provision- she said most of ehr famillies fight to have their kids placed in MS! I can't understand that. We are so desperate for ds3 to get the support he needs, we have education otherwise in palce for reception JIC we need it (shared between me and CM, we can do that as he is a July baby- and then I graduate anyhow).

maybe its an environment thing, I worked with SN adults and did college placements at SN schools etc so had some idea of what i was facing when ds1 showed signs. Bt some people spend their whole lives desperately trying to achieve some self imposed standard and then they have an sn child, perceive that as failure and their world crashes. Unfortunately you DO have to learn to get on with it and put the childs interests first.

I think it takes a while to realise where your child fits in though. At 2 I really wouldn't have recognised that the children in ds1's school were like him, now I can see that they are exactly like him

I also remember when he was 2 considering ABA but thinking that he wasn't severe enough to warrant it. What a huge mistake. I think that emphasises the need for better diagnosis- all along I was open to intervention and support, but the pros were telling me his problems were mild, and he would catch up. We wasted over a year in that mode- and of course you want to hear that so you believe it!

Fubsy, I think you are being a bit Londonist. It is far from like that everywhere in London. I have met parents like you describe but there are just as many, if not more, who are not like that. Maybe its just more noticeable/intense because of the density and make up of the population. I particularly hate the pressure for children to be "successful" whoever they and whether they have SNs or not. I am avoiding it like the plague with DD but I have come across it in the SN world, I just know to avoid those people and stick with the calm, accepting and lovely ones instead.

Hester, on this site, was offered a termination at 35 weeks because her baby had talipes. (clubfoot - now corrected by relatively minor procedures) [no appropriate emoticon]

it is interesting that studies have shown where parents have had contact with people with DS or families where a member has DS - they tend to continue with the pregnancy.

That must be very unusual, though, Blu.

Certainly it was never mentioned as a possibility to us with DS2.

Yes, unusual...except that someone who works at the same hospital (another MN-er) told me that consultants do that because of potential legal come-back.
Wasn't mentioned to us, anyway, over DS. Not once the 'soft marker' rigmarole was cleared up.

+++ at termination for talipes - I was born with that, although positional and no residual problems.

But I have treated many children with severe forms of it, and would not have condidered it life ruining enough to imagine those kids not existing. I have seen some extreme cases where a lot of surgery was needed to correct the foot or feet, but even so.....

Davros, youre quite right, I am Londonist! Cant help it though - when someone with a child with CP says they dont want their child going to a school full of spastics, its difficult to know what to say. I was there when there was the first big push towards "inclusive" education, which just seemed to fail everyone and allowed a lot of families to continue denying their child had SN.

But now Im hijacking the thread, maybe I should go and sign that petition.

Fubsy, are you an orthopaedic surgeon? Just interested, as DS2 was born with bilateral talipes.

Sorry, just a physio! Havent treated any babies for a long time as where I work now the hospital physios treat them, but I did in a previous job.

What Rx did your son have?

I'm not familiar with the term Rx, but basically we started off having the conventional treatment at the Royal London, then switched to the Ponseti method with the very wonderful Mr de Kiewiet in Sunderland.

My sister in law is pregnant, and earlier in her pregnancy they found that the baby may have Downs.

She didn't want to tell me that she was going through all these tests. She was worried how I would react because my dd has got a rare genetic condition called marfan syndrome that she inherited from my dh, (ds is just a year older and didn't inherit it). S in law didn't know that 4 years ago it wasn't possible to test for this ante-natally, and thought that I'd had all the tests and gone ahead with the pregnancy anyway (which I would have done even if I had known for sure, but that is my personal choice).

S in law was intending to terminate if subsequent tests came back positive as they said they could not cope with a baby with Downs... It turned out that their baby is fine.

When I was pregnant with my DD she was found to have a brain abnormality that most babies with Edwards' Syndrome have (but not all babies with that abnormality have Edwards).

We declined an amnio as we realised that whilst it may "cross off" some of our worries, it by no means guaranteed what we started calling a Sainsbury's Baby. I had already lost a baby at 19 weeks so my yearning was to deliver a live baby - not a "perfect" baby.

This attitude that testing somehow guarantees you a Sainsbury's Baby is so misguided, and so dangerous. There has to be an element of "for better for worse" when you go into a pregnancy, and for a lot of people there just isn't.

I'm sorry you are finding it difficult, TeeCee. I hate hearing people talking about testing as well .

Fubsy I think that's interesting. When the Ed psych (you probably know her ) told me that ds1 "wasn't suitable" for special school I was delighted and it did mean that we did underestimate the significance of his SN. He was doing well at a ms nursery- but that was a ms nursery with a lot of specialist knowledge and PECS trained staff for example. DS1 gets so much more at special school, horse riding, music therapy, swimming, hydro, cooking. At ms he walked round and round the school or had to be compared to ms educaitonal targets which frankly were meaningless. Mornings of bead threading? Why why why? yes he still gets to practice his fine motor skills- but in a meaningful way, and he has access to the curriculum he needs, not an attempt at the mainstream NC.

That comment about spastics is a) shocking and b) sad. Do you think its active denial? I know when ds1 was younger I did totally under-estimate his problems- I'm not sure it was active denial, or whether it was because people around me were saying that his problems were minor (originally), and then when they began to say his problems were significant continued to say he could do well in ms, When blatantly he couldn't.

Up at A+E the other day one of the nurses was talking about a child in ms and said "obviously someone like ds1 could never go to ms school". When I said he'd spent 4 terms there she looked stunned. She'd have probably been even more stunned if I'd told her the only reason he left was because I requested it. The LEA were happy for him to stay. Criminal.

Just found this thread. It makes me uncomfortable too. DD has severe cerebral palsy and I wouldn't be without her for anything. but tests seem to say that her life has no value. That its ok to cull people like her, that only prfect babies should live.
Its a mixed up thing for me.

Dinos - I used to work at the Royal London! (Community, not really in the hosp). Ive heard of the Ponseti method, its the current best treatment I think? Hope its going well!

Jimjams, Fio - I agree with your points on SN schools. When the government pushed for inclusion,and apparently more parental choice it left a huge number of children with virtually no education at all. How can sitting at a separate table with a LSA threading beads be considered inclusive? MS schools dont have the time or the skills to teach those useful life skills that SN schools do so well. And I thinka lot of professionals suggest mainstream as they are scared of the parents reaction if they mention SN school.

Mind you, lots of children start in one and transfer or do part time in both and that can work well depending on the child and the school.

As far as denial goes - I remeber one child a long time ago who needed a wheelchair. His Mum absolutely refused to have a chair, but instead wanted a buggy with stripes and a frilly canopy because she thought she could cope better if she pretended he was still a baby.

He was 4 and had very very mild learning difficulties and CP.

On the other hand - theres loads of really great parents who love their kids to bits, however they are. Working with children with dyspraxia and related conditions is interesting - theres plenty who have difficulty with just a slight variation to the norm. Having a child of my own is great here - Some parents are really quite shocked when I tell them their child is well within "normal" limits - their expectaions can be incredibly high.

Ok. I find a lot of this thread upsetting. Maybe its my hormones.

I posted way further down.

Maybe some people do have these tests and have a rather cavalier attitude about it all. I certainly don't; nor do the people I'm aware of in real life or web groups. Surely its just as kneejerk and intollerant to view people having CVS / amnio as all practicing some kind of eugenics; denying any possibility of disabitlity and in some kind of pursuit of the "perfect" baby.

I'm completely aware that if I manage to have a child without the UBT I carry, that doesn't mean they are guaranteed to be free from any disability or problems. Quite the opposite in fact, I'm more aware of all the other things that could happen due to the circles I move in with my DD. I would love to give birth and be given my baby to hold. To go home 6 - 12 hrs later and NOT be in NICU for weeks, go home, then be in the children's hospital for months. Having a baby without UBT would make that more likely, but I fully accept I could have a premature birth or encounter problems at delivery that would still mean I don't have my idyllic new mother moment.

My attitide on disability is that it could become part of anybody's life just like that - through illness or an accident. It is just part of life.

My brother presumably had no chromosome abnormality yet he had problems and killed himself as a teen. Being "normal" is no guarantee to happiness or a long, healthy life.

But here I am, facing the possibility of CVS in a few weeks time (if I don't mc before). Quite frankly, I'm shitting myself. I don't want to be faced with a heartbreaking choice but similarly I don't want to invest more emotional energy in a doomed pregnancy; nor do I want to have 2 profoundly disabled children (best case scenario if UBT pregnancy were to survive). The fact that a child could have "striking facial abnormalities" (doctors comment about my dd btw), physical disabilities and be slow to learn really is the least of my worries. Its the health issues; the innability to breathe properly, knackered organs etc that frighten me.

I'm not saying that I am right either. I'm saying that I am making the right choice for me and my family at this point in time.

I've read stuff on here and other sites re pre-natal testing and terminations that have really upset me too. I read a story on 'a heartbreaking choice' website anout a woman who terminated her baby with Turner's syndrome because of "the pain that she would face later on in life not being able to mother her own children". My gut reaction was like FFS, what if yr "normal" girl made the choice not to have children or had other fertility issues anyway. But at the end of the day, any anger I feel at that must pail in comparison to what she went through delivering her dead baby and what she has to live with for the rest of her life.

Sorry for ranting on guys. Just had to get that off my chest.