1 in 5 chance of Down's: To CVS or not?!

[Violinnem]

Thank you both for your comments, they're both very much appreciated and heart-warming momto3kiddies I totally get where you're coming from when considering that disability may occur later in life and that is a bridge to be crossed if that is a scenario. At the moment we are early along enough to have more of a choice that's more controllable than disability in later life. That's not to say that this is a life not worthy of continuing despite it having chromosomal abnormalities as it's been a VERY painstaking decision that we made, and I understand all the implications surrounding the 'right'ness or 'wrong'ness of the choice. For us at this time in our lives it's the right one. That'll just have to do for now!

Thank you lockzie too for such a supportive post when the time comes for you to decide to have the screening and subsequent diagnostic testing (some women decide not even to have the screening done as they're so set on it not making a difference to their decisions) I hope that you approach the options with a clear and logical frame of mind, researching all that you can to help those decisions and stick to what YOU and your OH feel is right for you. It concerns no one else but just the two of you. We've chosen not to tell anyone outside my immediate family (my OH has decided to not even tell his mum, stepdad and sister, as he "doesn't need the emotional support" that I do. You know men, they keep stuff to themselves, and we women mostly like to offload, vent and consider 'a problem shared is a problem halved'! That's why I told my mum dad and two sisters anyway!) in fear that they just wouldn't understand, so if the results come back unfavourably then as far as the wider world is concerned we lost the baby naturally. That's all they need to know, nothing more.

Thank you again and I wish you both a happy and healthy 9 months! x

 

[AlwaysPraying]

You have been incredible through all of this. Its a cruel fate knowing some of the information. I pray all will be ok for you. It's the way of the world no matter what the results it will all be ok.

 

[daydreaming22]

Hoping the test goes well! And in response to what the PP said, there is NOT always a 1 in 5 with blood test. You are correct in saying that 1 in 5 is high risk. High risk is anything under 1 in 250. Sorry, I just dislike when people misinform others.

 

[Missmarie87]

Missmarie87, is there? Was that the blood tests you get with the NT scan at 12 weeks? Do you know why there's always a 1 in 5 with the blood test? Glad to hear you're low risk. Must be a huge weight off your mind x

I got it at 12 weeks nearly 13, took a while to scan the nucal and it hurt a little with her pushing, and the blood test was quite fast, i think overall for that its worth getting the test xx

 

[Sunshine12]

Hoping the test goes well! And in response to what the PP said, there is NOT always a 1 in 5 with blood test. You are correct in saying that 1 in 5 is high risk. High risk is anything under 1 in 250. Sorry, I just dislike when people misinform others.

I wondered what she was meaning too as, like you have pointed out, 1 in 5 isnt a connected figure when it comes to NT ratios.

Violinnem, Ive been wondering how you are doing but I didnt want to post again on your thread incase you didnt want to speak about it ATM. I will be thinking of you when you get your amnio. Please let me know how you get one and try not to worry. Massive hugs. xxx

 

[ZoeZo]

Violinnem, thank you so much for sharing your thoughts and feelings in this thread.

I'm in the same position as MissMarie, my OH wants the NT screening done, personally I feel it's all 'risk factors, percentages' and things to give us unnecessary worry when I am sure the majority of pregnancies are absolutely fine, 80% is a really good chance.

I know you have made your decision based on what the results are, but have you read Kelle Hamptons birth blog (Enjoy the small things) ? I wont post the link in case in case you feel it may give you doubts (but you haven't even got your amnio results yet, every possibility baby is fine). She didn't know she was having a downs baby, it's a very honest moving story.

I lay in the bath stroking my hump and think 'it's you and me kid whatever the screening says' as you love and bond with your bumps already - then I think I don't think I could cope with a DS baby, wracks me with guilt - so I am scared about consenting to NT screening - my scan in on 17th Jan. (I'm 35 so risk is already up)

My Mum was 39 when she had my brother in 1978 and had an amnio, and he was carried until term, I'm sure the testing is even better these days - they sent her for one purely because of her age.

I feel for you that you have another week to wait, seems like a lifetime between finding out your 'odds' and having the amnio, I'm sure we'd all want it done asap Praying for you x

 

[Violinnem]

Thank you again for the support everyone - don't know what I'd do without you!
I'm feeling a little more positive today, just thinking "what ever will be will be" (can't shake those bloody doubtful voices at the back of my mind, but I suppose that's normal!) and keeping my fingers crossed for good results.
The specialist at the hospital I'm going to hasn't had anyone miscarry after an amnio procedure and I'm relying on that data to settle my mind and hope that I don't stuff up their statistics! Lol.

ZoeZo - that thought of not being able to cope with a DS child fills me up with guilt too, which was why it was SUCH a hard, painful and distressing decision to come to. I won't read that story if you don't mind, thank you for posting it btw, I just need to focus on what's ahead of us and keep things in place mentally or I might crack. We had a couple of weeks of going back and forth and each time we changed our minds and then discussed it then rediscussed it then one of us broke down and re-changed our mind... it's just been here there and everywhere, and now we've finally come to a firm decision we're just going to keep the plan in place for our mental health.
The decision to have the NT scan / combined test is totally a personal one and no-one can say 'do it' or 'don't do it' as it's just up to you and your OH. Personally, me and my OH had agreed no to have the screening done, then it came to my first midwife appointment when she was booking the scan: She asked "just the dating scan or the NT scan?"... then something just made me say "NT scan". I think deep deep deep down I knew I couldn't cope with having a baby with a chromosomal disorder and so HAD to know exactly every detail about how this baby is developing. I'm a planner, worrier, OCD type personality anyway in all other areas of life and so felt really uncomfortable about leaving some this important to fate. Again, this is just my situation and my viewpoint and I'm not insinuating you should or shouldn't listen or allow this to alter your own choices. Just sharing my journey so far is all!

Let me know how you get on and what you decide to do. We're all here for each other whatever!

Sunshine12 - thank you so much, don't worry I cant stop thinking about it so it's not been buried deep ready to be dug up again, it just sits right at the front of my mind at all times! Stresssssssssss.....

Thanks again everyone - I hope you're all ok and babies are healthy xx

 

[AllyTiel]

Just wondering, but have you considered adoption if your child doesn't turn out like you hope? People really do adopt down syndrome children. A family in our small church adopted 2.

 

[Violinnem]

It's another option AllyTiel, though personally, I couldn't cope with going right throughout the pregnancy and the birth knowing I wouldn't be keeping it. Again, I know how that sounds. Thank you for the suggestion though! x

 

[AlwaysPraying]

One step at a time my dear. Get the cvs done, and go from there. This is such a hard thing to have to decide something so drastic a head of time, not knowing if it's actually going to need to happen or not.

Down syndrome or any other syndrome has many variables to it. Some children with down syndrome have serious health issues, that can be seen in utero (heart, etc), so severe that they may not make birth. I only say this because it seems some people think that a down syndrome diagnosis means some special challenges with a delightful personality. HOwever, there's so much else going on as well. Heart, growth, mental capabilities all vary incredibly with this condition, and a shorter life expectancy.

My point is, there are details of down syndrome that not everyone knows (there's no reason that most people would know, so it's not a fault thing). I just felt the need to add for a different perspective.

V. your doing so well dealing with this, I admire your strength. But one thing, you don't NEED to be dealing well with this, just be genuine in your feelings and reactions (and it sounds like that's just what your doing).

 

[Broodypants]

I just wanted to say I think you are fantastic, you are being so brave and so dignified in your responses on this thread at what must be such an emotional time for you and your OH. I don't mean to sound patronising but I think you should feel very proud of yourself.

I wish you all the best in the world for your test next week. I hope with all my heart your little one is healthy.

xx

 

[momto3kiddies]

Violinnem, thank you so much for sharing your thoughts and feelings in this thread.

I'm in the same position as MissMarie, my OH wants the NT screening done, personally I feel it's all 'risk factors, percentages' and things to give us unnecessary worry when I am sure the majority of pregnancies are absolutely fine, 80% is a really good chance.

I know you have made your decision based on what the results are, but have you read Kelle Hamptons birth blog (Enjoy the small things) ? I wont post the link in case in case you feel it may give you doubts (but you haven't even got your amnio results yet, every possibility baby is fine). She didn't know she was having a downs baby, it's a very honest moving story.

I lay in the bath stroking my hump and think 'it's you and me kid whatever the screening says' as you love and bond with your bumps already - then I think I don't think I could cope with a DS baby, wracks me with guilt - so I am scared about consenting to NT screening - my scan in on 17th Jan. (I'm 35 so risk is already up)

My Mum was 39 when she had my brother in 1978 and had an amnio, and he was carried until term, I'm sure the testing is even better these days - they sent her for one purely because of her age.

I feel for you that you have another week to wait, seems like a lifetime between finding out your 'odds' and having the amnio, I'm sure we'd all want it done asap Praying for you x

Thank you for sharing the name of the blog, I looked it up and just finish reading...beautifully written and puts things into perspective

 

[AllyTiel]

It's another option AllyTiel, though personally, I couldn't cope with going right throughout the pregnancy and the birth knowing I wouldn't be keeping it. Again, I know how that sounds. Thank you for the suggestion though! x

Is your emotional well being more important than a life? I don't think it is right to kill a child because it could be an inconvenience in your life. I don't think anyone is ready to handle that, but they do, because it is a child. I know down syndrome children to be very happy and friendly. Their quality of life does not suffer generally, because they know nothing else. I hope you would at least do that for your child, and it is still your child, no matter its genetic state. I would hope for that unconditional love from my parents, and I know your baby does too. I don't understand how anyone is okay with this. It honestly seems that noone values life.

 

[AllyTiel]

Daydreaming, exactly. My baby is a blessing but it's the effect on their life and ours that we've decided we cannot handle and are not ready for. There's nothing wrong with just wanting a healthy and typical life for your child and yourselves, so this is why we came to the decision we did.
As emk10 said previously you honestly cannot predict what you would do until you are dealt that card in life yourself. I didn't think this would be the decision we made, but here we are...

And Im sorry, but the part about wanting a typical life for yourself? You chose to have a child. There are risks, you never, ever know what will happen. Your child could be 11 years old, be struck by a car and have brain damage. Be able to walk, but seem very different. Would you leave them to die? I would hope not. Yes your life would change, but its your child. Its part of you. I am shocked that I have yet to see one person speak in this helpless childs defense. If you want to do the minimum for your baby, at least give it a chance at living. Adoption is hard for anyone, no matter the state. But its a loving decision. This all is under the theory that your baby has any issue.

 

[Violinnem]

AllyTiel - quick question: have you yourself ever been placed in this situation?

There's a lot of "I'd do this" and "I'd do that", but really, until you've been in the situation yourself you've no right to judge someone in the preachy way as you are doing.
This is real life, and Downs is not just the friendly amicable nature you're describing. There's a huge variety of health issues connected to the disorder that can raise their heads in varying degrees, so is it fair for the child to have to live with that throughout their life?

Get off your pedestal.

 

[Violinnem]

One step at a time my dear. Get the cvs done, and go from there. This is such a hard thing to have to decide something so drastic a head of time, not knowing if it's actually going to need to happen or not.

Down syndrome or any other syndrome has many variables to it. Some children with down syndrome have serious health issues, that can be seen in utero (heart, etc), so severe that they may not make birth. I only say this because it seems some people think that a down syndrome diagnosis means some special challenges with a delightful personality. HOwever, there's so much else going on as well. Heart, growth, mental capabilities all vary incredibly with this condition, and a shorter life expectancy.

My point is, there are details of down syndrome that not everyone knows (there's no reason that most people would know, so it's not a fault thing). I just felt the need to add for a different perspective.

V. your doing so well dealing with this, I admire your strength. But one thing, you don't NEED to be dealing well with this, just be genuine in your feelings and reactions (and it sounds like that's just what your doing).

Thank you so much for this response AlwaysPraying. I love the sense of realism and practicality you've given and highlighted a lot of the key issues me and my OH were discussing when talking openly and honestly about the situation. We didn't know all that much about DS before this, so researching it further was the reason we came to the decision we did.
I totally get what you're saying about not planning too far ahead! I do this is every area of my life and plan plan plan (possibly because I'm a teacher so it's a major part of my life anyway!) for every possible scenario. I'm not one for taking things step by step, but have to look beyond events and decide what would happen if this happened, or if that happened etc. it's a part of my nature that gets on top of me much of the time but I can't seem to shake it unfortunately!
Thank you again for your support xx

 

[Medzi]

 

[lcTaylor]

Violinnem, I'm in a similar situation. I am a carrier for cystic fibrosis and we have yet to find out if the donor (private) is. We will be doing that next week. But, if he is, the baby has a 25% chance of having cystic fibrosis. I will not terminate the pregnancy, but I'm wondering if I should get an amnio to either prepare for our new life, or to not have to worry about it.

I have a friend who was in the exact situation as you. She wanted to do an amnio because she wanted to prepare the family for the news before the baby was born. She just wanted everyone to be happy and excited about the baby, not shocked about what could be wrong. She waited until the latest time to do an amnio and talked to the clinic about their amnio/miscarriage rates.

I hope you decide what to do, just remember your decision should be something you feel good about. I wish you and your growing family the best!

 

[daydreaming22]

It's another option AllyTiel, though personally, I couldn't cope with going right throughout the pregnancy and the birth knowing I wouldn't be keeping it. Again, I know how that sounds. Thank you for the suggestion though! x

Is your emotional well being more important than a life? I don't think it is right to kill a child because it could be an inconvenience in your life. I don't think anyone is ready to handle that, but they do, because it is a child. I know down syndrome children to be very happy and friendly. Their quality of life does not suffer generally, because they know nothing else. I hope you would at least do that for your child, and it is still your child, no matter its genetic state. I would hope for that unconditional love from my parents, and I know your baby does too. I don't understand how anyone is okay with this. It honestly seems that noone values life.

I think a lot of people feel this way, but until you are put in the situation please dont judge! If we took a poll I bet 90% of you would say you would keep the baby no matter what. Kind of odd given that 90% of women given a DS diagnosis choose to abort!

 

[mommylam]

I think it really depends on how badly you need to know now for your peace of mind. You can always have the amino later and get the results when the risk of miscarriage has lessened. I think that it's just a very personal decision that you'll have to make based on what you feel is best for you, your partner and baby! Good Luck to you!

I just realized that I posted this really late in the game and I'm sorry that I hadn't read through to see where you are currently! Anyhow...sorry for that....I'm reading through now!