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Post by Alice on Sept 15, 2004 9:24:29 GMT -5
CC~ I agree with you, we should not judge any one! Deanna~ I was wonder too how the Amnio could say what stage of DS can be. "Severe DS"?? When we had tested Luke for DS, we've been told that test can not tell how sever or mild his DS is, it will be seen as child grows. I am glad you saw the show.
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Post by momofrussell on Sept 15, 2004 9:45:56 GMT -5
I am going to assume from my own experience in knowing prior to birth that Russell had DS, that the severity was not told by the Amnio but rather the Ultrasound.
They usually do a Level II US prior to the amnio and have to do an US anyway to see where the sack is FOR the amnio. When I had my Level II the doc knew RIGHT away that Russell had DS. He also told me he saw nothing wrong with Russell's heart and it is good that Russell did not have a cleft lip/palate. Doc said that kids with cleft lip/palates are usually SEVERLY disabled, not just with DS.
I know some docs see or don't see things with US's and it comes out to be false, but some Perinatologists DO know their stuff.. and they see enough to know. So I think that the US may have been why they thought the baby was severely disabled.
Just my guess...
a.
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Post by ALLISA on Sept 15, 2004 10:24:42 GMT -5
I have heard the same statistic that someone put up here....over 90% of woman choose to abort if a baby has DS... I am STUNNED by that number. But what scares me even more..... is knowing that fact when it is time for advocating for school, and rights for our children. I worry that in a room of people trying to come up with school budgets..... there has to be someone in there who made a decision NOT to "burden" herself & society with a child with a disability and will they now wonder why should they pay X amount of dollars to give my child an aide in class ? If there is such a drive to abort a child with DS.... will they not at some point feel resentment towards our children as "burdening" society ? Just a sad thought....don't usually go to these thoughts too often, but they are usually under the surface. Also to add...... I have only had positive experinces, but just seems to reason that the thinking that would terminate a baby would carry forward to later years.
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Post by Staci on Sept 15, 2004 10:31:43 GMT -5
I think doctors exaggerate a LOT! When I was pregnant with Parker (we didn't know about Aidan until after he was born that he had DS) I did have an amnio because of preperations and all (I live in a tiny town!) and found out late in my pregnancy that my baby girl would have a heart defect. You should have SEEN this doctor...I think if I wasn't so far into my pregnancy, and if I didn't have a child with DS, he would have definitely been pushing abortion, just by the negative way he was! He actually TOLD me that my baby girl would NOT live long after birth!!!! If he is telling ME this...think about what he is telling other's who are in the same or similar situations??!! I am constantly hearing about doctor's doing this...actually pushing abortion on folks. I think if the doctors would be positive and TRUTHFUL (IE: how can you tell a baby has SEVER DS in utero, come on!), it would change a lot of people's minds about DS or spina bifida or cystic fibrosis or heart defects or hydrocephalus or anything out there! Anyway...that's my two cents worth Staci
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Post by momofrussell on Sept 15, 2004 11:11:17 GMT -5
Hey Staci, I am not trying to change your feelings, but I I want to share something. Don't shoot me, K? My best friend, Clayette, is a Labor and Delivery nurse. Has been for probably 12 + yrs. When I found out that Russell had DS while pregnant, she was DEVISTATED for me... she sees LOTS of things WE don't. She also had a neighbor while we grew up and her daughter has DS. She is 22 now and SEVERLY handicapped. She is mentally/cognitively around 2 yrs old IF THAT. She was very open and honest with me and did NOT want me to have Russell. I did not get mad either. For two reasons, every one who knows me knows I do what I want LOL, AND... my friend sees VERY AWFUL things in the delivery room... So, even though we don't agree how docs talk to us, I think their world is VERY different then a pregnant mom with Rose Colored Glasses. I am not implying any of us wore those glasses, but in general, the mom's are IN LOVE with the baby and pregnancy, and the docs live in a world where they see things and show statistics otherwise. I am sure when he told you that about your daughter, it was not out of ignorance or meanness, but out of experience. JMO though. I know for my bestfriend, she has ALOT to hold on her shoulders sometimes, seeing what she does in the delivery room... and I can only assume the docs have that same load. And so their reality is VERY different also. A.
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Post by Chris on Sept 15, 2004 12:17:30 GMT -5
CC,
As a former fetus, I feel very strongly about the right of every fetus to be allowed to continue to grow. Every human who has ever walked this earth has been a fetus. This is NOT a judgement, it is FACT. A newborn baby will die without a person to care and nurture him, just as a fetus relies on his mother to take care of all his needs before he is born. No Christie, it is not a judgement and I resent being called judgemental. I would be horrified if a mother killed her newborn with Ds or without Ds just as I am horrified that ANYONE would kill their child before they are born. It is not a judgement, it is a fact.
Chris
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Post by Kristen on Sept 15, 2004 14:59:03 GMT -5
I don't chime in much aymore, but I have to say, I support Chris's right to her opinion. It may not be the all accepting PC hug the world one that a lot of people have (or pretend to) but it's hinest and with conviction. I respect conviction of the heart. So much better than a show.
As for aborting a baby with DS, I would not. I would not ever abort any baby unless something like, we would both 100% die in delivery and it was either I live to raise my kids and bury one or we both go off to heaven and leave my two babies here without a mommy. Even then I would agonize. That's me and my opinion.
I think it would be SIGNIFICANTLY reduced if people knew the pros of the situation. Like, you ain't gonna love them any less and they will forgive you for not being perfect, too. Too many knee jerk reactions. Too many screw ups, too. I personally know a woman who aborted on twin who had spina bifida and ta-da! They screwed up and aborted the one who didn't. Hmm...makes ya think twice.
In general and especially in this case because it's personal to me now, why the hell don't these people have the baby and then give it to a family that welcomes and loves it? There is literally a waiting list of people trying to get babies with DS as well as other "situations" shall we say? I heard one woman say it would be too hard ot carry the baby then give it but she didn't want a "damaged" child. There you go again - fear. Fear of loving the apparently imperfect (as opposed to the rest of us who don't wear it on our faces)? Fear of the unknown? Fear of inadequacy? All I have to say to all of that is WELCOME TO PARENTHOOD! Some of us get shoved in to the deep end, some of us only wade and others take a slow decent into the murky depths, but we're all in the same pool!
Done preaching. All i keep thinking is that I wanted a baby. I got a baby. If I wanted perfect, I would have bought a doll.
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Post by christie on Sept 15, 2004 18:04:10 GMT -5
K, let me say this subject is always a touchy one whenever brought up. And yes I do AGREE that Chris is entitled to her opinions as each and everyone here at UNO is. BUT saying one aborting is "just wrong" I am sorry I find that judging one that might have taken that path, without even knowing the other person's story or circumstances. YES, some may not agree with abortion and I believe they are entitled to feel that way BUT saying its a fact anyone that did is WRONG, Hmmmmm who are we to say another is WRONG what makes them sooooo RIGHT?? Sounds a bit attacking to me In my opinion, nothing is so black and white... CC
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Post by shellk on Sept 15, 2004 19:31:55 GMT -5
Girl let me tell ya that I was sitting in a dealership waiting for my van to have an oil change when this came on...And I will admit that I had tears in my eyes in public..I just really thought that the statistics were really high for termination..60% of women will terminate and 40% will continue..I just sat there and watched and mumbled to myself, until the lady next to me asked me why I seemed upset about this, and I told her about my Kourtney and she let the flood gates open and told me about her cousin who is 34 with DS and how she could not picture her life with out him in it..The testing is one thing and I am glad that they have it available for people, but I was alarmed at the percentages..
I should add that I am pro-choice and am not judging anyone..But that thing about that one ladies baby having severe DS was odd to me I also was told that mild or severe is more determined after and during growing up.
Michele
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Post by ashleysmom on Sept 15, 2004 19:35:19 GMT -5
I saw the preview for that but did not get to watch it. All I can say is thankfully I wasn't faced with that decision. As upsetting as we were at Ashleys birth it was best we didnt know.
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Post by christie on Sept 15, 2004 22:49:30 GMT -5
K, I promised myself I would not come back to this post as its tooo controversial(sp?) BUT Hmmmm I just have to ask?? Where are these statistics gotten from ?? REALLY I mean nooo one asked me and many woman choose abortion not even knowing their baby may have DS, just look at how many moms here at UNO were young when they gave birth to their child with DS, noooo reason to expect their child would have DS, soooo really where does the number come from Hmmmmm Many young people choose abortion for whatever reason, we will not know, how many of them could have been DS??? Just in this thread alone I have seen different statistics I could be sooo wrong BUT I wonder who really knows for sure Just today I was at a Center for DS and a Doc that has lots of experience with DS said you know you have heard that MOST males with DS are sterile (sp?) BUT he believes as our kids live longer and more testing is done that number will change and we might be surprised Numbers don't mean much to me cause anyone can say any number and someone, somewhere will believe it Hmmmm I am starting to think I may have DS Burn Out or maybe Message Board Burn Out Cause for me, if I were asked I would share it ALL not just the positive. How can someone really understand not hearing it ALL And as much as I love my son, with all my heart, it certainly is not a piece of cake. Just one little opinion being shared here CC ~
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Post by Cbean on Sept 16, 2004 0:07:37 GMT -5
Ok, probably should keep my mouth shut on this one as I am knee deep in the middle of all this prenatal stuff and still want to divide and quarter my perinatologist.
So the woman who terminated was told her baby was going to have a severe case of DS? I was told there was no way to tell how "severe" it could be until the baby was born and began to grow and reach or not reach milestones, etc. By many who include OB/GYN, Early Intervention and even...DR. EVIL!
I'm with CC that we are not to judge people's decisions. But I think there should be a judge out there for the bozos, called "doctors" who are picking up the phone calling these women with inaccurate information and of course the all-time favorite "options."
I would like for someone, somewhere to clear up all these misconceptions for the benefit of everyone involved! With all the research to develop all this new technology, why doesn't someone come up with a better reason for it other than to offer an earlier opportunity to terminate. Ok, climbing off soap box.
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Post by Renee' on Sept 16, 2004 1:04:42 GMT -5
I was told this same thing...
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Post by momofrussell on Sept 16, 2004 9:59:49 GMT -5
Well, I do believe the "statistics" involved are for the "women who know in utero by amnio that their child will have DS and choose to abort" group. THAT is the ONLY thing that comes into factor in these statistics. Not the ones that didn't know, and not the ones that aborted for "other" reasons. I DO agree that they ARE just numbers... statistics are used as guides in different communities, i.e. medical, gentic, ect... what ever the case may be, not to offend. AND, since statistics change ALL THE TIME, I mean daily really, you will GET those variables. Like I had Russell 6 yrs ago and they told me 80% of those who know their child had DS aborted. But some of you got a different number based on THAT doc, THAT day and THAT year and what ever "statistic" they READ recently LOL. And also keep in mind with these statistics, that race, religion and lack of knowledge do NOT come into play... which would sku the statistics differently. They are what they are... only a guide.. that changes with the wind. And I know so many that get offended that docs even MENTION termination as an option, but they took an oath and have to pay MAJOR malpractice $$ JUST to inform us of our options. I think SOME, who see drastic things in thier life, like I mentioned with my friend who is a nurse, might EMPHASIZE it more due to their own emotion, but not all docs. I don't even remember my Midwife even talking to me about it, the options. I remember just the "let me know" talk.. I had a WONDERFUL midwife though! The genetic counselor did talk about what DS was, statistics (that word again) and OPTIONS. And they HAVE to talk about all the options too. I just remember being naive in thinking that children w/DS are so "cute" and thinking ALL women keep their babies after finding out... I was wrong. When I talked to my Midwife and told her we were forging on, she just said ok.. didn't doubt me or convince me otherwise or do the "are you sure" thing. I do remember asking "all women keep them right?" LOL (I made it sound like a doll they got two off at a bday back when I asked it), she replyed NO, 80% don't And docs talking about SEVERITY.. I don't think they are not talking about MENTAL severity, they are talking about physical, when in utero. Because yes, no one knows mentally where our children would be. But, like those dang statistics, docs inform you based on what they SEE in utero... and even though sometimes they are wrong, they HAVE to tell you... personally, i'd rather have a doc tell me worse case scenario and it be wrong then have a doc pacify me and say "it should be ok" and then have some major health probs. But, truly, they know that certain physical anomalies shown in utero, DS OR NOT, CAN prove to be dabilitating to the child and even possilby death.. so they only tell us from what they know. Some docs are ONLY medical fact related and that is how they operate, others are more commpasionate and that will reflect in their approach also. (glad I had a midwife;) ) The ones that are driven by medical facts and statstics will paint a different picture... Case and point, Russell had cataracts when he was born and they were removed. Our wonderful doc we had for 3 yrs in CA said by the time he was 4-5 yrs old, he could get the lens implants. We then moved to IL and had this doc that said NO.. Russell should NOT have them. I then called our doc in CA who agreed. I was DEVISTATED.. I mean, they TOLD ME... BUT.. both docs reasons were the MEDICAL risks outwayed the thoughts developement progress that Russell could benefit from. Our first doc said with all of Russell's eye probs, it wouldn't do him a DARN bit of good and this surgery could put him at risk for other things... and the second doc agreed. ANY risk in their book, even if only 20% (that statistic again) was TOO much of a risk! And they both advised me against it, second doc basically said NO he wouldn't do it. THEN I went to the doc we have now... WONDERFUL doc... his approach was that their WERE risks, but that the benefits of developement outwayed the risks.. and the risk was worth it to him; that Russell needed his eyes. Were those first 2 docs WRONG in their info or WRONG to dissuade me? NO... they were just geared differently. Did I put my son at risk based on those statistics... YOU BETCHA! The way I see it, after having Russell and knowing the "statistics", we WERE a statistic, and it CAN happen again... but can doens't mean WILL... numbers.. they are just numbers. I was looking online before I started posting to see just where the statistics come from too... I am assuming the statistics probably come from Planned Parenthood or probably the AMA... who knows... I am sure more than one place does their "findings".. and they all could be different. Ok.. so I am rambling... I am not trying to sway anyone here, but I just think since we are having this wonderful healthy debate, I'd throw some "statistic" stuf out there LOL. And I told CC I wasn't going to post anymore LOL P.S. to CC... HUGS to you!!! Sounds like your plate might be full right now. GOSH can I relate... I can send you some CALGON if you'd like, and a "break from Uno" pass you can use if need be I LOVE ya and love your posts. I'll let you take a break but don't go far, k? A.
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Post by steffipoo on Sept 16, 2004 10:28:19 GMT -5
WISH I could even watch a TV...LOL... I usually get to see the tube at 11pm at night and end up dozing off at the news!!! WOW interesting topic. I'm glad I didn't know during my pregnancy. Think I mighta went buggy . I must say that just hanging out in the neighborhood and knowing all these people who might not have otherwise met a child with ds,I feel like Olivia has had such an impact on our community. Last week I had Olivia at the park. A lady I met years ago there told me a GREAT story. Her sister was visiting her and was at the park with this lady and her kids.this is when Liv was about 2 and a half) WELL APPARENTLY Olivia made such an impact on this lady's sister that all these years later the lady tells me her sister is about to give birth to her first child and she has ds. This ladys' sister comes once a year to see her sis. WELL year after year this lady has seen Liv at the 4th of July parade.APPARENTLY they have been watching us from afar...LOL STALKERS!!!SO this sister finds out she has a child with ds on the way and she told her sister that seeing Olivia her bro and us as a family TOTALLY changed her way of thinking thru the years.SO a lot of her fear was relieved. The fear of the unknown is the worst part of the diagnosis in my mind. So without saying a word we do not even know what impact our kids have on our communities and neighborhoods. In this huge city of Los Angeles. AND a doctor once told me she has a very MILD case of ds. I wanted to laugh but thought the glance to his resident like what the *&**& was enough to show the new docs that the man was and still is an imbecile.LOL I feel that Olivia has such an extended familyIn this huge city of Los Angeles Olivia has such an extended family .Like I am not doing this alone.
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