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

[Violinnem]

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!

Thank you. I really hope that you find out good news about the donors risk of carrying the CF gene and it's as low as possible. Same to you - your choice not to terminate should the baby have CF is your own personal decision and one to be admired there's such a good chance of it not doing too which is fantastic.

I've also heard that amnios can be done much later in pregnancy as I spoke to the charity called ARC (Antenatal Results and Choices) and the lady presented that as an option. Personally I wouldn't be able to wait that long to find out for definite whether it was Downs or not, but waiting until the risk is no longer of mc but of preterm labour is great for those who have firmly decided to continue no matter what. It's all very personal these choices!

Xx

 

[momto3kiddies]

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.

 

[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!

Thank you. I really hope that you find out good news about the donors risk of carrying the CF gene and it's as low as possible. Same to you - your choice not to terminate should the baby have CF is your own personal decision and one to be admired there's such a good chance of it not doing too which is fantastic.

I've also heard that amnios can be done much later in pregnancy as I spoke to the charity called ARC (Antenatal Results and Choices) and the lady presented that as an option. Personally I wouldn't be able to wait that long to find out for definite whether it was Downs or not, but waiting until the risk is no longer of mc but of preterm labour is great for those who have firmly decided to continue no matter what. It's all very personal these choices!

Xx

Obviously, I hadn't read all the posts before I posted this. Now I have, and have to say that I am so upset that more women are not supportive of you. To me, it's no person's right to be judgmental of another family's decision. They don't know you, they don't know your family and most of these people aren't in and haven't dealt with the real possibility of this situation. There are conditions that mean a painful and difficult short life for the child, not just the parents. How could you judge anyone for choosing to end that pregnancy? And in the case of DS, and for me CF, there are degrees of severity. It can be very mild, or very, very difficult for the child. In my opinion, if you know yourself well enough to know that you couldn't handle the situation, deciding to end the pregnancy is responsible.

I'm sorry, I know you understand this, I'm just surprised at how some women are responding to you.

I completely respect your decision, whatever that ends up being.

 

[Violinnem]

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!

Thank you. I really hope that you find out good news about the donors risk of carrying the CF gene and it's as low as possible. Same to you - your choice not to terminate should the baby have CF is your own personal decision and one to be admired there's such a good chance of it not doing too which is fantastic.

I've also heard that amnios can be done much later in pregnancy as I spoke to the charity called ARC (Antenatal Results and Choices) and the lady presented that as an option. Personally I wouldn't be able to wait that long to find out for definite whether it was Downs or not, but waiting until the risk is no longer of mc but of preterm labour is great for those who have firmly decided to continue no matter what. It's all very personal these choices!

Xx

Obviously, I hadn't read all the posts before I posted this. Now I have, and have to say that I am so upset that more women are not supportive of you. To me, it's no person's right to be judgmental of another family's decision. They don't know you, they don't know your family and most of these people aren't in and haven't dealt with the real possibility of this situation. There are conditions that mean a painful and difficult short life for the child, not just the parents. How could you judge anyone for choosing to end that pregnancy? And in the case of DS, and for me CF, there are degrees of severity. It can be very mild, or very, very difficult for the child. In my opinion, if you know yourself well enough to know that you couldn't handle the situation, deciding to end the pregnancy is responsible.

I'm sorry, I know you understand this, I'm just surprised at how some women are responding to you.

I completely respect your decision, whatever that ends up being.

Thank you so much I'm a firm believer in having the right to make your own choices, unjudged by people who have strong beliefs of a different inclination.
I too respect other viewpoints and decisions and would never try to ram my opinion down another persons throat in a plainly offensive manner, as has been done previously in the thread.

Thank you so much once again, your support is greatly appreciated - I didn't want to just click 'thanks' and that's it!

Again - good luck with your own situation I'm keeping my fingers crossed for good news xxx

 

[momto3kiddies]

Obviously, I hadn't read all the posts before I posted this. Now I have, and have to say that I am so upset that more women are not supportive of you. To me, it's no person's right to be judgmental of another family's decision. They don't know you, they don't know your family and most of these people aren't in and haven't dealt with the real possibility of this situation. There are conditions that mean a painful and difficult short life for the child, not just the parents. How could you judge anyone for choosing to end that pregnancy? And in the case of DS, and for me CF, there are degrees of severity. It can be very mild, or very, very difficult for the child. In my opinion, if you know yourself well enough to know that you couldn't handle the situation, deciding to end the pregnancy is responsible.

I'm sorry, I know you understand this, I'm just surprised at how some women are responding to you.

I completely respect your decision, whatever that ends up being.

I have tried to be nothing but respectful but honestly, in this part of the forum there are women in the first trimester that are hoping and praying that dont they see blood every time they do something as normal as using that bathroom when they wipe, many have had one loss or more and are more than willing to love and care for a child whether it be "normal" or not. So yes, some may not agree with the decision she is making, but that is their opinion just like its her choice what to do. You shouldn't be "shocked" as you said because I'm sure she was fully aware of the fact that some may not agree with her decision. there is actually a section on this forum with women that are going through the same thing..that may be a little more helpful

 

[mommylam]

My first response was obviously under the thought that this was a new thread so sorry I hadn't read through it completely before responding..

Also there really isn't much for me to add one way or the other since so much has already been said...so I just want to wish you peace through what certainly has to be a very painful and devastating time for you and I truly hope that you find out your baby is perfectly healthy. Good Luck to you!

 

[Violinnem]

My first response was obviously under the thought that this was a new thread so sorry I hadn't read through it completely before responding..

Also there really isn't much for me to add one way or the other since so much has already been said...so I just want to wish you peace through what certainly has to be a very painful and devastating time for you and I truly hope that you find out your baby is perfectly healthy. Good Luck to you!

No need to apologise at all! Thank you for comments
Yes, I started this when I was in the first trimester but then continued to use it as I passed over into the second. xx

 

[Sunshine12]

Violinnem, you should maybe ask the administrators to move this over to the Gestation Complications forum rather than first tri hun as it could upset some people who are suffering losses or loss worries etc. (you know Im behind you with this but I think momto3kiddies has a point about it perhaps being in the wrong section.) x

 

[lcTaylor]

Obviously, I hadn't read all the posts before I posted this. Now I have, and have to say that I am so upset that more women are not supportive of you. To me, it's no person's right to be judgmental of another family's decision. They don't know you, they don't know your family and most of these people aren't in and haven't dealt with the real possibility of this situation. There are conditions that mean a painful and difficult short life for the child, not just the parents. How could you judge anyone for choosing to end that pregnancy? And in the case of DS, and for me CF, there are degrees of severity. It can be very mild, or very, very difficult for the child. In my opinion, if you know yourself well enough to know that you couldn't handle the situation, deciding to end the pregnancy is responsible.

I'm sorry, I know you understand this, I'm just surprised at how some women are responding to you.

I completely respect your decision, whatever that ends up being.

I have tried to be nothing but respectful but honestly, in this part of the forum there are women in the first trimester that are hoping and praying that dont they see blood every time they do something as normal as using that bathroom when they wipe, many have had one loss or more and are more than willing to love and care for a child whether it be "normal" or not. So yes, some may not agree with the decision she is making, but that is their opinion just like its her choice what to do. You shouldn't be "shocked" as you said because I'm sure she was fully aware of the fact that some may not agree with her decision. there is actually a section on this forum with women that are going through the same thing..that may be a little more helpful

I'm one of those woman hoping to not see blood every time I wipe. I understand that people are going to disagree, I respect that too, everyone has their own opinion, but to express it rudely is shocking to me.

 

[Violinnem]

Fair point ladies! I've asked the administrator for it to be moved into Gestational Complications.

 

[AllyTiel]

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.

This has nothing to do with you, or me, and I'm not judging. Quit trying to take the attention off the baby! Thats the life that matters in this situation. There is still the fact that adoption is a very good choice, because at least noone dies in that. I've known more than a few down syndrome children, and they lived a relatively normal life (I am perfectly aware of the other health issues than can be present). If you aren't willing to deal with it, like I said, theres adoption and someone could! Wouldn't you want to give you child a chance if it did have a genetic disorder? I don't really understand why you would be offended. I am one of the only people to speak in babies defense, and that angers you? You want everyone to say its okay, so you feel no guilt about it. Again, sorry to offend, but I will risk offending to stand up for innocent children. BTW I do know what I would do in the situation. Keep it or adopt it out. Because no matter what, I don't believe killing is ever an option, no matter what the circumstance.

 

[ame704]

Hi, I am not here to judge you. You are right, it is hard to know all the emotions that go into this decision if you never had to deal with it. I wish you the very best and I hope and pray for healthy baby.

I can offer you two stories that happen to my sister and sister in law. My sister was only 20 years old and they told her that between her scan and blood work he baby could possibly have downs. Well my nephew is 25 yrs old now and healthy as can be. My sister in law was around my age, 35 yrs old and she had the NT scan/bloodwork. Her results were NOT good. Now my niece is 7 years old and she is healthy as can be. I think these test are horrible because they stress people out and don't seem to be that accurate. I am only 8 weeks pregnant, I am 35 yrs old and scared to death of getting this test. I do have a question and I am hoping someone can help. Is downs a genetic trait, meaning does it run in families? Also if they test your blood, can't they do this before pregnancy to see what the likelihood of this would be? If you have a downs baby, is it more likely that you would be prone to having another downs baby?

Sorry for all the questions. I am trying to decide if I even want this test. It has a bad track record in my family...

 

[girlinyork]

Hi Ame, downs is a complete genetic anomaly - no link to parents' genetics. Nobody really knows why it happens. They can only correlate risk factors. I know loads of "older" mothers and not one had a downs baby.

On another note, I lost my baby last weekend. It's little heart just stopped beating. I was really distraught but found out after the ERPC it was malformed and had all sorts of problems. My heart is completely broken but ultimately I can't help thinking it was for the best. I don't know if I would have gotten rid further down the line. Before I got pregnant I would have said no - absolutely not. But the idea of my baby suffering through its whole life is agonising. If I even try and put myself into the position where I might have had to had consider it I simply can't comprehend it.

Like I said before - if there are consequences for your decision, they are yours and yours alone. I just feel so sorry for what you're going through xx

 

[Violinnem]

Because no matter what, I don't believe killing is ever an option, no matter what the circumstance.

Exactly - YOU believe that. I believe something else. End of. You do what you like with your body and your baby. I'll do the right thing for me, my OH and my baby within the context of my life, situation, beliefs and opinions.

 

[Violinnem]

Hi Ame, downs is a complete genetic anomaly - no link to parents' genetics. Nobody really knows why it happens. They can only correlate risk factors. I know loads of "older" mothers and not one had a downs baby.

On another note, I lost my baby last weekend. It's little heart just stopped beating. I was really distraught but found out after the ERPC it was malformed and had all sorts of problems. My heart is completely broken but ultimately I can't help thinking it was for the best. I don't know if I would have gotten rid further down the line. Before I got pregnant I would have said no - absolutely not. But the idea of my baby suffering through its whole life is agonising. If I even try and put myself into the position where I might have had to had consider it I simply can't comprehend it.

Like I said before - if there are consequences for your decision, they are yours and yours alone. I just feel so sorry for what you're going through xx

I'm SO sorry for your loss. Words just can't describe what you must be feeling at the moment. This is why I'm trying to get this thread moved over to another forum, out of the way of women like yourself who are suffering awful losses in their first trimester. Again, I'm so sorry for what you've gone through.

I also said no to termination under any circumstances before I got pregnant, unfortunately that view shaken. Everyone can theorise as to what they'd do but just can't understand until its them in the situation personally. x

 

[daviess3]

Vio just wanted to pop in an say good luck with ur amnio an I think it's a brave decision either way! Do what's right for you an ur hubby! My sil has a disabled child an she loves him to pieces but she also has a really really hard job!! She's single mum now an her daughter also is a carer to her son!! She has to think about when he's older an bigger an she can't take care of him!! She also says if she new what quality of life he would have an the operations he would suffer her decisions may have been different! He was a prem baby so slightly different!
I just wanted to give you a situation an theres no right or wrong here just what's right for you good luck my lovely xxx

 

[Violinnem]

Thank you for your sil's story and support that's exactly the reasons we're having the amnio so we know what the case really is and can deal with whichever road that needs to be travelled down. I agree that if it's clear the child will suffer throughout its entire life then sometimes other choices need to be considered.
Thanks again and yey for your little prune you're brewing!! xxx

 

[daviess3]

Thank you xxx

 

[ame704]

Hi Ame, downs is a complete genetic anomaly - no link to parents' genetics. Nobody really knows why it happens. They can only correlate risk factors. I know loads of "older" mothers and not one had a downs baby.

On another note, I lost my baby last weekend. It's little heart just stopped beating. I was really distraught but found out after the ERPC it was malformed and had all sorts of problems. My heart is completely broken but ultimately I can't help thinking it was for the best. I don't know if I would have gotten rid further down the line. Before I got pregnant I would have said no - absolutely not. But the idea of my baby suffering through its whole life is agonising. If I even try and put myself into the position where I might have had to had consider it I simply can't comprehend it.

Like I said before - if there are consequences for your decision, they are yours and yours alone. I just feel so sorry for what you're going through xx

I too am so so sorry for your loss. How many weeks were you?

 

[pickleton]

Ive ready through most of this thread, I'm not posting to judge or pass comment on previous threads.

Only to say that I cannot truthfully know what it would be like or how I would feel in your situation, it is such a hard thing to go through and it takes a lot of courage and strength of character to come to a decision one way or another.

I wish you all the best for your up and coming tests and I hope that everything works out for you.

I was so strongly against having a CVS or amnio test until a week ago when we found out that DH has a chromosome abnormality, which could be the cause for our past losses. We have no idea what impact this will have on our pregnancy as we have yet to discuss the results with the specialist. All I know is that I am now considering an amnio depending on the results of my NT scan next Friday.

Again I wish you all the best. xxx