1 in 9 chance of downs syndrome. What do I do next?

[lolliehp]

Hello, I am currently 17 weeks pregnant and have just been given the results of my quad blood test and they have said my chance of a downs syndrome baby is very high at 1:9. I wouldn?t have a termination as the baby is wanted whatever the result but I am struggling to work out whether I should have an amniocentesis so that we can prepare ourselves for what to expect over the next few months.

I suffer with depression and am scared that I would not be able to cope as I already have a 5 year old. My partner and myself realise it is not the end of the world to have a downs child but its all come as such a shock. Any help would be appreciated. Thanks.

[KnitterNotTwitter]

Hi there - sorry to hear that you're in this situation. it is so hard... Each hospital trust has different policies so do you mind if I ask you a few questions....
Will you be getting extra scans given your risk level? Often they do extra scans to check heart development etc...
Are you the sort of person who likes to be prepared, or are you more of a 'spirit of the moment' person?
to be honest i understand that in the first few days there isn't much different from a non-DS baby... What happens next depends on whether your baby has DS and if they have any of the associated issues - often heart issues which may require operations etc...

I'd also suggest contacting the DS Association who have masses of materials....

[KnitterNotTwitter]

Also Kellie Hamptons's blog is lovely

[lolliehp]

Hi, I was only told yesterday at 3pm and they wanted me in for the amnio at 8.45 this morning! I told them this morning that I hadnt had enough tome to think things through so they have made me an appointment for next tuesday. I am having extra scans due to my first child being stillborn so I presume they will do the other checks then. I also like to be prepared because of my depression. Thanks for your post.

[lolliehp]

I have also posted this on the pregnancy board and have been slated for saying I want to be prepared! Thanks so much for telling me about Kellie Hamptons blog - it is lovely xx

[TrinityIsAShreddingFatRhino]

I haven't slated you
I completely agree that you need to be prepared
BUT you can be prepared without having the amnio

[lolliehp]

please leave me alone. things are hard enough without you following me from board to board.

[nickelbabe]

I personally wouldn't terminate, so I don't see the point in having an amnio.

Obviously, it's your choice in the end, but it is true that you can be prepared without having the amnio - which has that risk of miscarriage.

You can read up on Down's and how it affects babies, then when the baby is born, you can go from there if you need further information about to bring up a child with Down's.

[TrinityIsAShreddingFatRhino]

I'm really rather shocked that you are so upset by what I have said
I'm telling you you are right in wanting to be prepared

BUT you dont need to have the amnio to BE prepared

what exactly is so nasty or wrong in what I'm saying?

[lolliehp]

thanks nickelbabe, my thoughts exactly but its always nice to get others opinions xx

[TrinityIsAShreddingFatRhino]

and I'm not following you from board to board I just clicked on another thread about people agonisong about the amnio and wanted to help as I had you and then I find its you AND you have told everyone I've slated you which I have not

[TrinityIsAShreddingFatRhino]

so nickelbabe gets a thanks and she is saying the same thing as me......

[lolliehp]

it was your tone on the first post. be prepared for what exactly? I was just asking for others opinions not to be questioned about wanting to be prepared. You also said holding, loving and feeding was all I had to do - that is a given. I had already said that having a baby with ds wasnt a problem its just that we wanted time to gather as much info as possible. My first day using mumsnet wasnt such a good idea

[nickelbabe]

some more information about Down's syndrome

this one is from the BBC

and anotherone

It looks like, as a baby, the main problems would be the muscles required for breast feeding, and also any heart problems that are related.
There is a Bupa article (which I haven't linked) that talks about getting children with the syndrome checked up at a Doctor's regularly so that any problems can be discovered quickly.

[KnitterNotTwitter]

Crikey! What happened here ladies!

I guess it's a difference between being prepared and being prepared...

You can prepare for either outcome by doing all the research now on DS etc...
OR
You can be have the test and be prepared for the outcome you're definitely going to get

Personally I'd want to do the latter because I'm a control freak... And for me the miscarriage risk associated with the amnio would be worth it for the finiding out - but for many people the risk wouldn't be.... With a risk of 1:9 of your baby having DS and 1:200 (?) of miscarrying you have to remember that there is a chance that you'd have the amnio, find out baby didn't have any chromosonal abnormalities but have a miscarriage caused by the amnio itself....

[KnitterNotTwitter]

sorry that should say "1:200 (?) of miscarrying due to the amnio"

[MumblingRagDoll]

My God Trinity...leave the girl alone. Do you have to justify yourself to someone who has enough to worry about!

[Bucharest]

You're not helping Trinity.

You decided not to have an amnio, fine.

I decided to have one, fine.

The OP is just in the process of deciding.

You might not be "slating" her, but you're not exactly being supportive of someone who has found themselves in a difficult situation, are you? Think about it for a moment....

[d0gFace]

Maybe you should let it go. Its obvious Trinity was trying to sort the situation out after feeling bad/confused for upsetting the op in the first place and it happened to make it worse. Im sure she isnt feeling great about it.

(Im not stalking/trying to rock the boat just happened to stumble upon this while browsing)

Sorry to carry on the hijack!

Hopefully some of these opinions have been helpful.

[Yaya70]

Hi lollie, I'm so sorry you've got this worry. I'm the kind of person that needs to know these things and, having been through a CVS before, I wouldn't hesitate for a moment to do it again if I was in the same situation. I would really try to put the very small risk of miscarriage related to the amnio out of your mind as, in experienced hands, it really is a very safe and straightforward procedure. Perhaps if you find out the miscarriage rate of the particular person doing your amnio that might help in your decision-making.

Do you know what it is that has raised your risk -- is it soft markers on the scan or something in your bloods?

Another option if you are worried about the risk of miscarriage but just want to know for sure whether the baby has Down's syndrome is to wait until you're further along in your pregnancy. Later on in pregnancy, the risk is that you will have your baby early, but if you waited to 32 or 34 weeks, for example, and you did go into labour there's a very good chance that baby will be ok. Another poster (Sparklies) chose to do this, so perhaps do a search for some of her posts.

[misty0]

Hello lovie,

I hope you're still reading? I'm sorry you've had a rotton time on your first day of using MN. I would just like to echo what yaya has said above. Very good advice. I've had CVS and it wasnt too unpleasant. Also the risk of mc does seem to vary between doctors/hospitals, but its always very small.

Mainly i wanted to wish you all the very best, and to say please dont hesitate to ask more questions or just chat about your feelings here as you will find much support now you are posting in the right place

[EggletinaClock]

Hi lollie, I hope you are still reading too - 99% of people here are very supportive and there is a lot of collective knowledge and experience that could help you decide.
I'd like to wish you all the best too and I hope you come to a decision on what will be the best course of action for you soon.
x

[aethelfleda]

Hi lollie, I hope you managed to decide what to do. Good luck with whatever goes ahead, FWIW I think you've been very sensible in thinking about all the options. Good luck hon.

[jellybeans]

Just to note that sometimes what you think you may do with the amnio results (not changing your mind) may actually be different when told something IS wrong than something might be. I know through simelar experience. Worth bearing in mind before going ahead with the amnio.

[glimmer]

Hi Lollie, I just wanted to say that 1:9 means that you have a chance of 89% that everything will be fine. It might not help with the decision to have amnio or not, but the overhwhelming chance is that you baby will be fine.

[Poochahontas]

Hi lollie,
Just wanted to say that I have a child with ds, so if you want to talk or ask any questions at all (no matter how difficult) about life with a baby/toddler/child who has Downs then feel free to inbox me if you feel you want to.

However this situation pans out, you'll find tonnes of support on MN. Please don't let a bad experience put you off.

xx