Brides Helping Brides ™ - Moral Issue/Question...not to invoke controversy...

btrflygrl Posted: Aug 30, 2004 11:18 AM

Moral Issue/Question...not to invoke controversy...

If you 'knew' via testing, etc. that there was something wrong with your child (early on in the PG) what would you do?

ambersmom Posted: Aug 30, 2004 11:32 AM

Re: Moral Issue/Question...not to invoke controversy...

We actually had this issue come up. It was discovered during normal testing that I am a carrier for Cystic Fibrosis. If my husband tested positive as a carrier, the chance of the baby having it would be 1/100. An amnio would tell 100% either way. Well he was tested and we discovered he wasn't a carrier, so the chances dropped to 1/1000. It didn't matter either way, I was going to have my baby. I didn't have the amnio to confirm or disprove the chance.

However, my sister got pregnant with her third late in my pregnancy. She was having issues early on (development was not progressing as normal, etc.). She unfortunately did not carry full term but if the pregnancy progressed further and it was shown he/she was severely disabled, I don't think she would have gone through with it. I don't blame her. We had a nephew who was born with severe physical disabilities (1/2 of his brain never developed - the parts that control motor functions, like sucking, swallowing, etc.). He should have never made it past birth, but he struggled through six months of life. He couldn't see, he couldn't eat (fed through a tube). He would go into cardiac arrest every single day because he'd 'forget' to breathe. It was horrible to watch him suffer. He was a literal pin cushion for his entire life. He was a guinea pig for the doctors who treated him. Having advance knowledge of the circumstances, I would never want to put my child through that. However, Eric was a little trooper and made progress in his little life. He heard birds chirping in the trees (would move his little head in the direction of the sound). And he started semi-crawling days before he died. A task the doctors said he could never do either. And he knew how to love. You could hold him against your chest and you could feel the love come from him..

He'll be gone 11 years on Sept 13th...

Kelly9904 Posted: Aug 30, 2004 11:37 AM

Re: Moral Issue/Question...not to invoke controversy...

Personally I can say I wouldnt do testing.

When My mom was carrying me she was 38 and her Dr was talking about how it was high risk etc... The Dr suggested an amnio this way if something was wrong she would have 'options'
My mom said no. That she was sure it would be fine and if it wasnt she woudl prefer to enjoy her 9 months of pregnancy instead of being upset about those test results! (needless to say I am fine!)

And my cousin had an amnio they told her her child had some health issues (I dont remember exactly what) but they decided to carry full term and her son was born perfect! He is 11 and has barely ever had a cold!

MrsTC Posted: Aug 30, 2004 11:44 AM

Re: Moral Issue/Question...not to invoke controversy...

if that happened to me....i would have to say that for whatever reason, this is the path God intended for me to walk....and I would have to deal with it as it happened.

ETA - ambersmom i am sorry to hear that

michele31 Posted: Aug 30, 2004 02:17 PM

Re: Moral Issue/Question...not to invoke controversy...

I discuss this with Scott prior to TTC and I told him that the baby in me would be carried no matter what. Now, if you put me in an actual sitation of someone tell me that my baby would be a pin cushion etc..I just don't know how or what I would do.

I am so sorry about your precious nephew. That breaks my heart

Dee7772 Posted: Aug 30, 2004 04:10 PM

Re: Moral Issue/Question...not to invoke controversy...

I don't think I could say what I woukd do until I was actually in that siutation. That is a tough question.

FutureMrs Posted: Aug 30, 2004 04:12 PM

Re: Moral Issue/Question...not to invoke controversy...

I have to comment on this because I have thought about this question alot. Is it wrong that a huge part of me thinks it is unfair to have a child that you know will have a difficult, painful, uncomfortable life. I don't know what I would do once this situation was presented to me and I hope none of us ever have to but I'm just wondering if I'm alone on this one.

btrflygrl Posted: Aug 30, 2004 04:37 PM

Re: Moral Issue/Question...not to invoke controversy...

Posted by FutureMrs

I have to comment on this because I have thought about this question alot. Is it wrong that a huge part of me thinks it is unfair to have a child that you know will have a difficult, painful, uncomfortable life. I don't know what I would do once this situation was presented to me and I hope none of us ever have to but I'm just wondering if I'm alone on this one.

I agree with you...while obviously it happened for a reason, I think it highly unfair to the child if their quality of life suffers, as in no social life, lack of care, the problems with insurance these days..... I hope NONE of us are EVER in this situation

michele31 Posted: Aug 30, 2004 09:43 PM

Re: Moral Issue/Question...not to invoke controversy...

I don't think it is wrong to feel anyway about this situation. I just think it is an awful position either way. There is no right or wrong, only a very difficult decision.

june262004 Posted: Aug 30, 2004 10:58 PM

Re: Moral Issue/Question...not to invoke controversy...

I honestly Don't think I could. god Gave me that Child for a reason.

usuk2004 Posted: Aug 31, 2004 10:46 AM

Re: Moral Issue/Question...not to invoke controversy...

I have to say that I think I would terminate. DH and I have discussed this and we agree. However, if I were ever actually in the situation where I was pregnant, I might feel differently.

SeptWed Posted: Aug 31, 2004 11:03 AM

Re: Moral Issue/Question...not to invoke controversy...

I think it really depends on the issue for me. Downs Syndrome I don't think so, but if its something that would make life horrible for that child and one that he probably would not live very long then yes.

My cousin went through this. They found out early on that something was wrong with their baby's spinal chord early on, they decided to go forward and when the baby was born the spinal chord was not fused right to the head. It lived for a few hours and died so I carry that with me if god forbid i need to make a decision like this.

michele31 Posted: Aug 31, 2004 11:08 AM

Re: Moral Issue/Question...not to invoke controversy...

I guess though I see it is a 'I got to hold my child for a few hours' and that IMO is way better than never holding my child at all.

ambersmom Posted: Aug 31, 2004 11:45 AM

Re: Moral Issue/Question...not to invoke controversy...

That's very, very true. In Eric's case, we all became very comfortable with the idea that he'd be around forever. Believe me, we all knew he wasn't going to accomplish things in life like a normal child would but there was still this deep disbelief that he'd actually be 'gone' someday. So when it did happen, it was like someone sucker punched me in the stomach. I couldn't even comprehend for a few minutes that it really happened. It was probably one of the single worst days in my entire life. That bond forms regardless of the circumstances and it's just so hard to say goodbye and let go.....it sounds incredibly selfish but I almost would rather never know who that baby was than to have it ripped from myself and my families life. Again, it depends on the degree of severity of the disability...Everytime I think of him, I hold on a little tighter to Amber and thank God that she is healthy and that he blessed me with the opportunity to know and be a part of someone so beautiful.

brideinapril Posted: Aug 31, 2004 11:58 AM

Re: Moral Issue/Question...not to invoke controversy...

Ambersmom - I'm sitting here with tears in my eyes. You've really touched my heart, I am at a loss for words.

michele31 Posted: Aug 31, 2004 12:38 PM

Re: Moral Issue/Question...not to invoke controversy...

I think we all hold our little ones tighter when we think of all of the saddness in the World. Your nephew was lucky to have such a special aunt in his short life. I think it is so special that he touched your life and you touched his. Maybe that is all that this really comes down to...love is NEVER wasted!

kptoys Posted: Aug 31, 2004 01:36 PM

Re: Moral Issue/Question...not to invoke controversy...

It all depends on what the condition was for me. If the docs were 100% sure my child would have a condition where their quality of life would be awful, painful, etc. I would have to say I would probably abort. I would hate to see any child in unnecessary pain for any reason. But if it were a minor problem that could fix itself with therapy or something that can be fixed via surgery in utero or out I would give my child the best care in hopes that all would work out. If not I would love my child the same as I love a child without the special issues.

This is a very personal difficult decision that you can only make a decision on when you have all the facts on the condition and see SEVERAL different docs for opinions.

goingtobemrs Posted: Aug 31, 2004 05:57 PM

Re: Moral Issue/Question...not to invoke controversy...

It is a very sad topic, but I have studied this and learned that many times, the tests are wrong in all, or in part as to how much of a disability a child will have. Down Syndrome is many times misdiagnosed. I am not saying yes or no to my response because I really don't know what I would do. But I am saying that I have worked with many disabled children that are more than happy to be here and as much as it breaks my heart to see them in any sort of discomfort or pain, they may not see themselves as disabled and might even be able to carry on a 'normal' life.

MayDay16 Posted: Aug 31, 2004 09:56 PM

Re: Moral Issue/Question...not to invoke controversy...

It happened to my SIL. She refused the amnio, thinking nothing was going to happen. By the 5 month she did her first sonogram and the Doctor saw something wrong. The baby's brain wasn't formed, he was missing fingers and toes. She had to face this challenge and in the end decided to terminate the pregnancy. She said it was horrible, they saw the baby, it was worse than anyone thought. She actually chose to deliver the baby. They gave her a pill to start labor. She just couldn't do the other thing. I can't imagine. She is still not right about it.

anna Posted: Aug 31, 2004 10:18 PM

Re: Moral Issue/Question...not to invoke controversy...

Posted by ambersmom

That's very, very true. In Eric's case, we all became very comfortable with the idea that he'd be around forever. Believe me, we all knew he wasn't going to accomplish things in life like a normal child would but there was still this deep disbelief that he'd actually be 'gone' someday. So when it did happen, it was like someone sucker punched me in the stomach. I couldn't even comprehend for a few minutes that it really happened. It was probably one of the single worst days in my entire life. That bond forms regardless of the circumstances and it's just so hard to say goodbye and let go.....it sounds incredibly selfish but I almost would rather never know who that baby was than to have it ripped from myself and my families life. Again, it depends on the degree of severity of the disability...Everytime I think of him, I hold on a little tighter to Amber and thank God that she is healthy and that he blessed me with the opportunity to know and be a part of someone so beautiful.

Your story and your precious nephew really touched my heart....
He's a special angel always with your family...
God Bless him and thanks for sharing your experience with this special and amazing little boy....