Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 I am sitting here watching a Discovery Channel Special called Pregnancy for Dummies. They just had a segment where they are currently conducting trials to attempt to detect specifically Down Syndrome during the first trimester. They said " for now this mother will have to wait until her second trimester to find out the " status " of her fetus. " The physician stated that they were excited about another study that showed they were able to predict 80 - 85% if the baby would be born with DS. It makes me so angry and hurt to listen to this discussion. It is worth so much to some people to not have one of these " damaged " children that they would even risk aborting on the chance there might be a problem. That is just a slap in my face. I know this shouldn't shock me. But, it does. Sorry, it caught me off guard. I was just answering email and had the program on in the background. I think I'll find some music to listen to.... Mom to Addyson(7) and (4) DS and ASD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 I understand, . NDSS and NDSC are both involved in trying to get obstetricians to provide more balanced education about DS along with contact information for national and local DS groups. About 90% of babies diagnosed with DS in utero are aborted today. It's a tragedy. was diagnosed at 16 weeks into my pregnancy. I was given the option to terminate. My primary OB was wonderful about it, but I noticed the high-risk OB office switched from calling him a baby to calling him a fetus, until we told them we wanted to keep him; then he was a baby again. I must admit I was devastated by the news. Fortunately, I am an info hound, so I read a lot and my husband and I went and met a couple families and kids with DS. That made a big difference, but it was hard to track down. My hope is that every newly diagnosed family would get a packet of info that's current, positive, and that gives them contact info for how to meet other parents. If handled correctly, a prenatal diagnosis can be a blessing. It allowed us to look into his heart status and be prepared. It gave us a chance to really choose , to learn more, and to be ready to celebrate his arrival when he came into the world. But all too often, families never get the chance to explore what life would be like; just to erase what seems to many like a horrible turn of events. Beth Testing for DS I am sitting here watching a Discovery Channel Special called Pregnancy for Dummies. They just had a segment where they are currently conducting trials to attempt to detect specifically Down Syndrome during the first trimester. They said " for now this mother will have to wait until her second trimester to find out the " status " of her fetus. " The physician stated that they were excited about another study that showed they were able to predict 80 - 85% if the baby would be born with DS. It makes me so angry and hurt to listen to this discussion. It is worth so much to some people to not have one of these " damaged " children that they would even risk aborting on the chance there might be a problem. That is just a slap in my face. I know this shouldn't shock me. But, it does. Sorry, it caught me off guard. I was just answering email and had the program on in the background. I think I'll find some music to listen to.... Mom to Addyson(7) and (4) DS and ASD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 Beth, You are right, early diagnosis can be a good thing. We did not choose to find out early since our nurse told us there was nothing we could do medically prenatally. We knew we wanted him regardless. They really pushed me for an amnio since I was 36 years old. I can see now how knowing ahead of time may have helped us deal with the shock and help us have a more positive experience after delivery. I think things went as well as they could have, not expecting any problems. We happened to be at a level three hospital and went immediately to the NICU where he received excellent care. Joe and I also had excellent nurses and doctors who said and did all the right things. I was also devastated when was born. We were very fortunate to have support and information to guide us. My heart breaks for the families who miss seeing the child through the diagnosis. Thanks for listening! > > I understand, . NDSS and NDSC are both involved in trying to get obstetricians to provide more balanced education about DS along with contact information for national and local DS groups. About 90% of babies diagnosed with DS in utero are aborted today. It's a tragedy. > > was diagnosed at 16 weeks into my pregnancy. I was given the option to terminate. My primary OB was wonderful about it, but I noticed the high-risk OB office switched from calling him a baby to calling him a fetus, until we told them we wanted to keep him; then he was a baby again. I must admit I was devastated by the news. Fortunately, I am an info hound, so I read a lot and my husband and I went and met a couple families and kids with DS. That made a big difference, but it was hard to track down. My hope is that every newly diagnosed family would get a packet of info that's current, positive, and that gives them contact info for how to meet other parents. If handled correctly, a prenatal diagnosis can be a blessing. It allowed us to look into his heart status and be prepared. It gave us a chance to really choose , to learn more, and to be ready to celebrate his arrival when he came into the world. But all too often, families never get the chance to explore what life would be like; just to erase what seems to many like a horrible turn of events. > > Beth > > Testing for DS > > > I am sitting here watching a Discovery Channel Special called Pregnancy > for Dummies. They just had a segment where they are currently > conducting trials to attempt to detect specifically Down Syndrome > during the first trimester. They said " for now this mother will have > to wait until her second trimester to find out the " status " of her > fetus. " The physician stated that they were excited about another > study that showed they were able to predict 80 - 85% if the baby would > be born with DS. It makes me so angry and hurt to listen to this > discussion. It is worth so much to some people to not have one of > these " damaged " children that they would even risk aborting on the > chance there might be a problem. That is just a slap in my face. I > know this shouldn't shock me. But, it does. Sorry, it caught me off > guard. I was just answering email and had the program on in the > background. I think I'll find some music to listen to.... > > Mom to Addyson(7) and (4) DS and ASD > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 /Sara, I was 31 when I was pregnant with my son and I did some bleeding. I felt my body was trying to naturally abort the baby.I was scared to lose the baby and scared something was wrong.I felt something was wrong in my soul.I new as a young person that I personally could not handle a child with Down Syndrome specifically and I asked my Doctor to do testing to make sure my son would be alright.To make a long story short the Doctor checked everthing out and assured me my son would be fine.He not only missed the Down Syndrome but he and another high risk Dr. missed my sons heart defect. I love my son and constantly fight to give him a voice and the opportunity to make choices for himself.As you know we have someone to fight constantly rather it is over getting the now dual dx, a teacher, Dr. whatever, this is not an easy life.I have had many days that I felt " stuck " in the wrong life.Like a dream I wanted to wake to hear my child talk and yes there are days that I pray to take away the autism and let him be just DS.I actually envey people I see with kids that are just Ds like today this beautiful girl with perfect hair came into where I work and she was Ds.Very high functioning and I thought I wish my child be like that.MY son face is always bruised were he hits himself,nose is croaked because of him breaking it and constantly hitting it.The head banging, the screaming for hours on end and the fecal smearing when you decide to be a mom you never think you like with be like that.Just what kind of life is this for my child.I have cried today and If taking meds could work for me I would do it but the only thing that can help me is helping my child recover from autism and him being able to talk.I know that I have speak for the child that cannot speak and help him be the best person he can be otherwise what kind of mother would I be.For the love of God the saying that " God gives special children to special people " if one more person says that to me I may go off.I love God and I believe he loves me but I do not believe God being a loving God would give this kind of life to anyone. Cyndi B > > We have Elie, by choice, because his birth family was not offered the option > of testing (she was 35) and they could not cope with the thought of a > defective son. Having said that, DS is one issue. ASD is another. I wish > there was more work being done to develope a test for ASD, prenatally. > > Also, my twins (again adopted) were born to a past 40 yo mother with a > history of severe postpartal depressioon. She wasn't ALLOWED the option of > an abortion. She died very young because of PPD. > > There is so much rhetoric over testing, not testing, allowing abortion or > not. Something we are all still free to talk about and decide for > ourselves. > > On Mon, Feb 25, 2008 at 6:55 PM, L. Davenport < > melissad@...> wrote: > > > I know that this is such a sensitive issue with us all. I was 27 when > > Logan > > was born and he was my first. We were very lucky that he did not have > > anything " major " wrong when he was delivered, but he stayed in the NICU > > for > > 2 weeks due to an unidentifiable infection and severe jaundice. > > > > When I was pregnant with my second child, we had a level three ultrasound > > so > > that we could be at the right hospital if high level medical care was > > needed, but we did not test for Down syndrome. > > > > Since that time, I have been on the outside watching a family torn apart > > after not getting a diagnosis and having a child with Down syndrome. There > > were MANY issues that I do not need to touch on and unfortunately, the > > baby > > only lived for a short time and never left the hospital. > > > > Now, after experiencing all of this, being almost full decade older, and > > being scared by Autism, I can honestly say, my decisions, if I had early > > testing, would not be black and white. I think, if I take a step back, I > > know that I truly do not know what I would do. This does not mean that I > > don't love and adore my little " Downtistic " son, but it does mean that I > > only have so many resources...sleep, strength, money - all of it. > > > > I think it is very easy to make a blanket statement, but as loving parents > > of children with disabilities, I think we can all agree, it is not easy. > > > > > > > > _____ > > > > From: [mailto: > > ] On Behalf > > Of mom_2_drew > > Sent: Monday, February 25, 2008 1:52 PM > > To: > > Subject: Re: Testing for DS > > > > Beth, > > > > You are right, early diagnosis can be a good thing. We did not > > choose to find out early since our nurse told us there was nothing we > > could do medically prenatally. We knew we wanted him regardless. > > They really pushed me for an amnio since I was 36 years old. I can > > see now how knowing ahead of time may have helped us deal with the > > shock and help us have a more positive experience after delivery. I > > think things went as well as they could have, not expecting any > > problems. We happened to be at a level three hospital and > > went immediately to the NICU where he received excellent care. Joe > > and I also had excellent nurses and doctors who said and did all the > > right things. I was also devastated when was born. We were > > very fortunate to have support and information to guide us. My heart > > breaks for the families who miss seeing the child through the > > diagnosis. Thanks for listening! > > > > > > > > > > > > > > I understand, . NDSS and NDSC are both involved in trying > > to get obstetricians to provide more balanced education about DS > > along with contact information for national and local DS groups. > > About 90% of babies diagnosed with DS in utero are aborted today. > > It's a tragedy. > > > > > > was diagnosed at 16 weeks into my pregnancy. I was given the > > option to terminate. My primary OB was wonderful about it, but I > > noticed the high-risk OB office switched from calling him a baby to > > calling him a fetus, until we told them we wanted to keep him; then > > he was a baby again. I must admit I was devastated by the news. > > Fortunately, I am an info hound, so I read a lot and my husband and I > > went and met a couple families and kids with DS. That made a big > > difference, but it was hard to track down. My hope is that every > > newly diagnosed family would get a packet of info that's current, > > positive, and that gives them contact info for how to meet other > > parents. If handled correctly, a prenatal diagnosis can be a > > blessing. It allowed us to look into his heart status and be > > prepared. It gave us a chance to really choose , to learn more, > > and to be ready to celebrate his arrival when he came into the world. > > But all too often, families never get the chance to explore what life > > would be like; just to erase what seems to many like a horrible turn > > of events. > > > > > > Beth > > > > > > Testing for DS > > > > > > > > > I am sitting here watching a Discovery Channel Special called > > Pregnancy > > > for Dummies. They just had a segment where they are currently > > > conducting trials to attempt to detect specifically Down Syndrome > > > during the first trimester. They said " for now this mother will > > have > > > to wait until her second trimester to find out the " status " of > > her > > > fetus. " The physician stated that they were excited about another > > > study that showed they were able to predict 80 - 85% if the baby > > would > > > be born with DS. It makes me so angry and hurt to listen to this > > > discussion. It is worth so much to some people to not have one of > > > these " damaged " children that they would even risk aborting on > > the > > > chance there might be a problem. That is just a slap in my face. > > I > > > know this shouldn't shock me. But, it does. Sorry, it caught me > > off > > > guard. I was just answering email and had the program on in the > > > background. I think I'll find some music to listen to.... > > > > > > Mom to Addyson(7) and (4) DS and ASD > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 Wow, I am not sure what to say. I really wasn't trying to judge or condemn anyone here. That is not what this group is about. Not what I'm about. I am very defensive about and can get very emotional about it. I am not having the best of weeks. Feeling very overwhelmed. I have also always disliked the comment that was given to us because we could handle it. I did feel that people must say that to try to make me and themselves feel better. > > Viola: You are too good with your words. I feel the same way. > > We were diagnosed prenatally when I was 20 weeks pregnant with an amnio, and we didn't have to think twice about not bringing Tori into the world. I was fortunate to know a few families with family members with DS, and knew how wonderful they were. Of course, we went through the whole grieving then, but grieved, learned and awaited her birth with bated breath. Tori was born just before my dad died from Alzheimer's and I know God's reason for sending her to us was to keep me busy. I was always the caretaker in my family, and I guess he figured, she would keep me quite busy. > > The ASD dx put us through the ringer, as I know it did for all of you..but she is still Tori, and although it is extremely tough at times to overlook it, she is still our Tori. The comedian, the jokester, the cuddly little love bug she can be, our own American Idol, and Regan (from the Excorcist) when it needs to be. > > Yet, with all this, she has brought more love into our lives, has enabled us to make more friends than we could ever imagine, and that is her blessing to all of us. > > Liz > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 nathan was diagnosed two days after he was born. Then with our second child we did all the tests so know what to expect and be a little more prepared then we were for our first. shawna In a message dated 2/25/2008 1:12:28 P.M. Central Standard Time, bdehoff@... writes: was diagnosed at 16 weeks into my pregnancy **************Ideas to please picky eaters. Watch video on AOL Living. (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/ 2050827?NCID=aolcmp00300000002598) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 , It is not about having a damaged child.For me it was about what I could personally handle.In my neighborhood their was a man that was 45 and he had polio.All of us children in the neighborhood including myself went to visit him almost daily.We loved JT. He was cripled, confined to a wheel chair and talked funny.We loved visiting this guy and he could paint beautiful pictures even though his hands were cripled.His parents were elderly and they loved him dearly but they also wished that he would go before them.Why? Because then they would not have to worry about how he would be taken care of when they were gone like maybe abuse or neglected.I worry for today about his needs and tommorrow. Cyndi > I am sitting here watching a Discovery Channel Special called Pregnancy > for Dummies. They just had a segment where they are currently > conducting trials to attempt to detect specifically Down Syndrome > during the first trimester. They said " for now this mother will have > to wait until her second trimester to find out the " status " of her > fetus. " The physician stated that they were excited about another > study that showed they were able to predict 80 - 85% if the baby would > be born with DS. It makes me so angry and hurt to listen to this > discussion. It is worth so much to some people to not have one of > these " damaged " children that they would even risk aborting on the > chance there might be a problem. That is just a slap in my face. I > know this shouldn't shock me. But, it does. Sorry, it caught me off > guard. I was just answering email and had the program on in the > background. I think I'll find some music to listen to.... > > Mom to Addyson(7) and (4) DS and ASD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Hi , I can totally relate to the fears of what will come of when we are gone. We are not the youngest of parents. Joe and I joke that we will be walking with our walkers when our kids graduate high school and get married. But seriously, we worry who will care for him, will this be a burden to his older sister, will he be lonely and afraid... I have often thought I hope we outlive him, but know how terrible that will be too. > > , It is not about having a damaged child.For me it was about > what I could personally handle.In my neighborhood their was a man > that was 45 and he had polio.All of us children in the neighborhood > including myself went to visit him almost daily.We loved JT. He was > cripled, confined to a wheel chair and talked funny.We loved visiting > this guy and he could paint beautiful pictures even though his hands > were cripled.His parents were elderly and they loved him dearly but > they also wished that he would go before them.Why? Because then they > would not have to worry about how he would be taken care of when they > were gone like maybe abuse or neglected.I worry for today about his > needs and tommorrow. Cyndi > > I am sitting here watching a Discovery Channel Special called > Pregnancy > > for Dummies. They just had a segment where they are currently > > conducting trials to attempt to detect specifically Down Syndrome > > during the first trimester. They said " for now this mother will > have > > to wait until her second trimester to find out the " status " of her > > fetus. " The physician stated that they were excited about another > > study that showed they were able to predict 80 - 85% if the baby > would > > be born with DS. It makes me so angry and hurt to listen to this > > discussion. It is worth so much to some people to not have one of > > these " damaged " children that they would even risk aborting on the > > chance there might be a problem. That is just a slap in my face. > I > > know this shouldn't shock me. But, it does. Sorry, it caught me > off > > guard. I was just answering email and had the program on in the > > background. I think I'll find some music to listen to.... > > > > Mom to Addyson(7) and (4) DS and ASD > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Holly, Thank you. I did have a theraputic cry (a few times!) and loved the margaretta idea! I might have to keep some on hand. I am feeling better. I do love this group and so appreciate all the people who post and share themselves. I never want to add to anyones pain. You all have been such a great encouragment to me. You never know whether you'll be laughing or crying with someone but you do know you'll come away listened to and encouraged. Thanks, > > > > Viola: You are too good with your words. I feel the same way. > > > > We were diagnosed prenatally when I was 20 weeks pregnant with an > amnio, and we didn't have to think twice about not bringing Tori into > the world. I was fortunate to know a few families with family > members with DS, and knew how wonderful they were. Of course, we > went through the whole grieving then, but grieved, learned and > awaited her birth with bated breath. Tori was born just before my > dad died from Alzheimer's and I know God's reason for sending her to > us was to keep me busy. I was always the caretaker in my family, and > I guess he figured, she would keep me quite busy. > > > > The ASD dx put us through the ringer, as I know it did for all of > you..but she is still Tori, and although it is extremely tough at > times to overlook it, she is still our Tori. The comedian, the > jokester, the cuddly little love bug she can be, our own American > Idol, and Regan (from the Excorcist) when it needs to be. > > > > Yet, with all this, she has brought more love into our lives, has > enabled us to make more friends than we could ever imagine, and that > is her blessing to all of us. > > > > Liz > > > > Quote Link to comment Share on other sites More sharing options...
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