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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

I had an amnio today and am now preparing myself for possibly having to make a terrible decision

130 replies

emkana · 06/02/2006 21:47

I had a repeat scan today. There were three soft markers for potential chromosomal abnormalities.

A month ago I would have been convinced that I would never have an amnio because I would never have a termination.
But when the results of the scan were presented to us today dh and I both knew instantly that we needed certainty, so the amnio was done there and then.
We also both feel that we would want to terminate if there is a chromosomal abnormality.
Am now reading past MN threads on termination of pregnancies with Down's, and am feeling that I will be condemned for wanting to terminate. Majority MN view seems to be that Downs' is no reason to terminate.
But my "gut feeling" is that this is what I would have to do.
Please someone talk to me, this is the hardest time

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geekgrrl · 07/02/2006 09:30

emkana, I have a dd with DS. I won't condemn you, whatever your decision. I think what I and other parents of children with DS find difficult is women terminating without getting the full picture. The consultants in hospital often have an idea of DS that was about in the 1970s or whenver they trained. The Down's Syndrome Association publish a leaflet on prenantal diagnosis , it's very balanced and informative.

As to your other dds - to be honest, the effect our dd with DS has had on the other two is the single most positive aspect about having a child with DS, for us. They're kind, caring and sensitive, far more so than other children their age. A lot of studies have been done on the effect on siblings, and there doesn't seem to be a negative impact.

But of course your decision has to be based on what you feel is right for your family.

ssd · 07/02/2006 09:35

emkana, I really wish you well. I had an amnio and I know the worry involved is monumental.

good luck with the results and you're decision.

ssd x x x

FioFio · 07/02/2006 09:37

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ssd · 07/02/2006 09:38

Also I hate to say this but I would definately have terminated if amnio came back showing Downs.

Please to all the mums with downs kids accept my apology for saying that, but it's honestly how I'd handle it.

emkana · 07/02/2006 09:40

The amnio was yesterday.

To be honest I'm frightened of everything, the whole scares me sh*less. It's difficult to explain.

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Piffle · 07/02/2006 09:40

Emkana I do not think anyone would judge you for making such a personal decision
As the mother of one older child and one younger child with special needs our family woudl struggle to cope with an additional special needs child too.
I really hope you get positive news, will be thinking of you and wishing you hugs xxxxxxxx

FioFio · 07/02/2006 09:45

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FairyMum · 07/02/2006 09:45

I don't have any wise words really. I hope your results will be fine. I grew up with a sister with ds and I love her dearly. However, I have always been very clear that if I had a choice, I would terminate the pregnancy if the baby had downs. My reasons are many and complex and, I feel, personal to me. Definatly based on my experience of growing up with a lovely, but very disabled sister.

Miaou · 07/02/2006 09:48

No advice to add emkana, but just wanted to say I am thinking of you just now.

bakedpotato · 07/02/2006 09:48

Emkana, have you got someone with you today?

emkana · 07/02/2006 09:50

Just two year old dd.

Tbh I can't talk to anybody about it really in RL, too difficult, too many tears.
Am actually contemplating going to toddler group in a minute and pretending everything is normal, doing small talk with other mums.

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FioFio · 07/02/2006 09:51

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getbakainyourjimjams · 07/02/2006 09:52

You would bond with the baby (I don't doubt that - if I did I wouldn't say it).

I'm a great believer in gut reactions so if your gut is that you wouldn't do it then take comfort from going with your gut. I think it is important to imagine how you would feel if you did get to know a child with DS in the future (I don't know a nephew born with DS, or a neighbour moving in or something). Because its a decision that you have to live with I think itsimportant to know that you would still feel that you made the right decsion in 20 years. It's kind of putting yourself in all the potentially difficult positions. Even then though your reaction may differ depending on the particular child.

If you did go ahead and have a child with DS- what do you know about the future? Well that's very hard to predict because DS is a spectrum. At the high functioning end you have a child who would attend mainstream school (and at the very high functioning take GCSEs, although that is probably very untypical), and at the lower functioning end they would be in an SLD/PMLD school and possibly never talk, and may well have challenging behaviouirs. You mentioned possible health problems- I think those need to be considered as well, as tey do add an extra dimension. Again Eidsvold has been through that with her dd.

How would it affect your other children? Well most research on siblings show that they grow up to be maturer and very well adjusted. Having said that life is definitely harder for a sibling of a child with SN, and they do miss out on some material things (easy holidays,family trips to cinemas restaurants etc can be harder- although I;m a great believer now in just doing thigs individually). Just by coincidence in this weeks Daiy Mail (eek! don't usually read- needed the financail mail) there is a piece in the magazine by Jo Whilley who's siter has cri du chat syndrome. I thought the piece was very honest, and her childhood appears to be very similar to ds2's. I hope ds2 and ds3 grow up to talk as positively about their childhood as she does (she had the same constraints about going abroad etc). She said that heer sister has been a very positive influence on her life- but she did test for cri-du chat and said she would have terminated iof she had been carrying it (no idea at what stage she tested though-I think that alters the ease of making a decision),

I know very little about having a late termination, but I think it would be important to try and find out as much as possible about it before hand. Even if only to see if there ways it can be made easier or things that can be done afterwards to help wth grieving etc.

As regards people on here who already have a child with significant disabilites, some would choose to terminate in future pregnancies, some would not, so there isn't any set way that coming into contact with disability makes you feel.

TBH I think you'll feel guilt whichever decision you make, so I would bin that right away. Hopefully the tests will come back fine, but if not just remember that you have been put in an impossible situation, and you just have to make the decision that you can most easily live with.

getbakainyourjimjams · 07/02/2006 09:57

Oh agree with Fio and geekgrrl. I think part of the problem is that you have no idea what living with a disability is like, so you are making a huge decision blind. You won't get an accurate picture from doctors. If I wanted an honest non-parental opinion of the effect of a particular disability and what it meant for families living with it I'd ask a teacher at a special school.

emkana · 07/02/2006 09:58

Thank you all again for taking the time to post.
It really helps.
Will go out now. dd actually just managed to make me laugh - she said "If you don't stop crying you can't go to toddler's"
I think that's me talking out of her there

Will be back later.

OP posts:
Marina · 07/02/2006 10:04

Emkana, do go to M & T if you possibly can. Mundanity does blunt the stress and anxiety for a few hours at a time.
I did not realise you'd had the amnio already. Still hoping that all might come right for you.
I think I can possibly understand a little of your dread of what happens next if you do decide to terminate the pregnancy.
I hope this is not inappropriate but if you want to discuss with someone what happens in an induced early labour, you can CAT me, if you think it would help at all. As I mentioned below, Rosy's brave, honest thread about her dd's dx of Down Syndrome and severe heart defects helped me be less scared of going into hospital. I was at least a little informed thanks to her courage.
I have searched the archives and found it, it is here if you wish to look at it. There are many, many supportive messages on it for her.
Rosy's thread from 2001
I hope all this helps a little. Thinking of you a lot today.

OldieMum · 07/02/2006 10:10

Nothing to add to the wise words here. But thinking of you.

Blu · 07/02/2006 10:23

Thinking of you, too, Emkana.

I think Jimjams has put things so wisely and well.

And I agree, ditch the guilt, and ditch anything you felt before you were in this situation. I have always said that no-one can precict acurately how they will feel in an unthinkable situation - and no-one who has not been in it has any right to judge. IMO.
Today is one day closer to getting the amnio results...

I know how you feel, I couldn't talk to anyone in RL either when we were waiting after our scan and amnio.

Enid · 07/02/2006 10:24

emkana, nothing to add or any words of advice, just thinking of you and I am sure you will make the right decision for your family. Enid x

corblimeymadam · 07/02/2006 10:36

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ProfessorG · 07/02/2006 10:49

I would never judge you. Be strong and think as clearly as you can in this hard time.

tonton · 07/02/2006 10:58

Hi. My borther (less than a year younger than me) has ds. I would say he is medium 'functioning'. Couldn't have a 'normal' job or go to 'normal' school. I adore him and he is a positive presence in our family's life. Having said that, in your situation I don't know for sure what decision I would make. My mum was always at home to care for my brother and he had the best attention. I work fulltime and dh is away a lot. I guess I just wanted to say that it is a very hard decision and whatever you do will be right for you. No judgements should be made on you.

getbakainyourjimjams · 07/02/2006 11:49

tonton makes a good practical point. It is very very difficult to work full time if you have a child with a significant disability unless you have excellent hands on family support. However I am planning to work term times only (school times only) from next year, and at the moment am taking an MSc, so it is possible to get out there. But if full time working was essential then it would be very very hard.

Dinosaur · 07/02/2006 11:54

emkana, when I had my 20 week scan with DS2 they identified two soft markers for Edwards Syndrome. I had CVS and although we did not ever verbalise it to ourselves, I think that if he had had Edwards Syndrome we would have chosen to terminate the pregnancy.

Just wanted to let you know I'm thinking of you.

xx

Hausfrau · 07/02/2006 11:59

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