Parents win

Becky - posted on 03/13/2012 ( 76 moms have responded )

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http://abcnews.go.com/blogs/health/2012/...



The parents of a four-year-old Oregon girl with Down syndrome were awarded $2.9 million after doctors misdiagnosed their daughter as not having the condition during a prenatal screening.



Ariel and Deborah Levy of Portland, Ore., filed a “wrongful birth” lawsuit against Legacy Health System, claiming that they would have terminated the pregnancy had they known they would have a special-needs child.



The Levys said the doctors were “negligent in their performance, analysis and reporting” of test results after their child was born as well.



“It’s been difficult for them,” said David K. Miller, the Levy’s lawyer, according to ABC News affiliate KATU. “There’s been a lot of misinformation out there.



“These are parents who love this little girl very, very much,” Miller said. “Their mission since the beginning was to provide for her and that’s what this is all about.”



The $2.9 million will cover the estimated extra lifetime costs of caring for someone with Down syndrome.



After the decision was announced, Legacy Health issued a statement that read, “While Legacy Health has great respect for the judicial process, we are disappointed in today’s verdict. The legal team from Legacy Health will be reviewing the record and considering available options. Given this, we believe that further comment at this point would not be appropriate.”



Types of Genetic Testing



It’s unclear what type of genetic testing the couple underwent. Genetic counselors say there are different types of screening options, including amniocentesis, chorionic villus sampling, and an ultrasound combined with blood testing.



A blood test with an ultrasound will only predict the risk of developing Down syndrome or other genetic abnormalities, said Virginia Carver, a prenatal genetic counselor at the University of Miami’s Miller School of Medicine.



Amniocentesis will determine whether or not a child has Down syndrome and is considered the “gold standard” of testing, Carver said. That test is typically about 99 percent accurate.



“But even the most accurate test isn’t 100 percent accurate,” she said. “There is a small percentage of chance that the testing might not be correct because of human error.”



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What do you think? I am appalled that they sued, and more appalled that they won. I understand that having a child with Down's Syndrome when you were expecting a healthy baby would be a horrible shock, but prenatal testing is not 100% accurate. Even the amnio, while close, is not 100% accurate. So unless human error was proven (which the article doesn't say, maybe it was), I really do not think they should have won this.

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Isobel - posted on 03/13/2012

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A reasonable jury of 12 people would not award anybody that sum of money if there wasn't sufficient evidence that a) there was an obvious egregious error and b) the case of down syndrome was severe enough to warrant the necessity of a lifetime of care.



People always assume that down syndrome is a fairly easy to deal with problem, that people with down syndrome are all high functioning like the ones we see on TV, but the fact is that down syndrome is OFTEN accompanied by SEVERE health problems.



If I lived in America, I wouldn't give birth to any baby that I couldn't afford to take care of for the rest of their life in the way he/she deserved...and I don't have millions of dollars so I couldn't have a disabled child. Call me cold or callous, but it's just being reasonably aware of my capabilities.

Sherri - posted on 03/13/2012

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When I had my first trimester testing done, it came back positive. My husband and I then had a chorionic villus sampling done with my pregnancy as they stated that they would know 100% if my child had downs, since it actually tests the babies DNA. If they had said it came back negative and I ended up with a baby with downs. You can bet your ass I would have sued as well especially since if our child had downs we were aborting as well. Luckily for us it did come back negative and my son is healthy as could be.



Now we weren't just being a**holes that just didn't want a special needs child. However, we have 3 healthy children already it would not have been fair to them to lose so much of their parents time because of the needs of a special needs child. Also we are older parents. So when we pass away our child would have been forced to live in a home somewhere for the rest of their lives and that would not be fair to them. As there is no test out there that can determine the severity of the downs which is a form of mental retardation. So no one could tell me the quality of life this child would have.

Tracey - posted on 03/27/2012

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May I respectfully ask if you have a disabled child? Yes they can be active within a family but it is more usual that the entire family changes to accommodate them, from the food they eat (allergies, special diet), to the jobs they do to allow time for caring, to how and where they go on holiday, to their (lack of) social lives because it is near impossible to get a sitter and they are too tired to go anywhere.



Can my child do everything my family can do, yes except use a toilet, cutlery, dress himself, feed himself properly, wash himself, walk to the shop safely, have a normal conversation, know the difference between right and wrong, be left unsupervised for more than 5 minutes.........



Yes care homes can be good, our respite is a wonderful place and when my son goes there it is the only 2 nights a month I get a decent night sleep.



Please tell me what I am failing to see as having lived with a disabled child for the last 13 years I would love to know what I am missing.

Isobel - posted on 03/14/2012

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I don't understand what's difficult to comprehend about that. I would have an abortion before giving birth to a child that I was not capable of raising properly if I was given that choice. If I gave birth to said child without being given the choice, it's quite obvious that I would fall in love with that child.



Because they don't have the same opinion about abortion that you do doesn't make them monsters.

[deleted account]

~filed a “wrongful birth” lawsuit...claiming that they would have terminated the pregnancy had they known they would have a special-needs child.~



~“These are parents who love this little girl very, very much,” Miller said. “Their mission since the beginning was to provide for her and that’s what this is all about.”~



those two bits are so contradictory it's laughable. i think this lawsuit was BS.

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Sumi12 - posted on 03/27/2012

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Oh wow it's good to know this but also the fact is that how these parents were suffering mentally in those times . It's very strange and ridiculous to know all these about doctor's and their behavior.

Baby bath tub

Sherri - posted on 03/27/2012

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@Danielle yes they can live on their own if they are high functioning but what happens if they are not?? Also what happens if you have a house that wasn't designed for a special needs child that will require a wheel chair or more but you can't afford to move?? What happens if your job is daycare but you can no longer do this because you have a special needs child, so now you lose your income??

Mother - posted on 03/27/2012

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I'm not upset with the parents.........I'm upset that ALL SPECIAL NEEDS children and their families can't be given such monies to make life a little bit easier.

Danielle - posted on 03/26/2012

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why is it that everyone feels it takes away from other children to have one of a disablity? When in fact it should only pull the family closer. That child can do everything the family does and more, yes that child may need to modify something but can still be active within. As far as group homes, they aren't a bad thing, many people with all forms of disablitities including DS live on there own with caseworkers that check in on them and help them when needed. I know plenty that have there own place, job, shop, cook, act as normal functional human beings. That is something you and some others are failing to see, THEY ARE FUNCTIAL HUMAN BEINGS that need some extra guidence, that is the only difference between them from you!

Danielle - posted on 03/26/2012

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In response to this and the response you gave me; I have known and still do know many families that have had to be faced with this choice, and a hard one I will add. But i also have known many children of disablities that are left without a "family" because people are to afraid to put any effort towords something they don't know or aren't comfortable with. It isn't how where your funds are when dealing with issues like this, there are a ton of programs that help families care for children of disablities, it is how you make that child feel as a part of a family a "normal life" and what is gained throughout there lives and those who sorround them. I have always felt that children and adults with disablities are the best to be around because they are so free and loving. They show more love in there life time for every little thing then you or anyone else could ever show in ours.

Yes teaching them is trying and is continuos but once they are of age and show responsiblity there are state and funded programs that get them out into society working, living on there own and so forth. I know this because I grew up in it and am going into that field.

I guess what I am saying is don't belittle something and not give life a chance because of fear and disrespect. Any big decision should come with research lots and lots of research before you finalize it. From what I read that wasn't the case it was all about money that is what is shameful, cold and calus. Then again I may be wrong and you did research it but maybe you should have posted that within you story!

Mommy - posted on 03/20/2012

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I absolutley know it is not, and judging from your post it appears your child is older. I can't imagine how difficult it must have been for you, and must still be for you. I give any parent who has a special needs child so much credit, you do something that most people can't.

Tracey - posted on 03/20/2012

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Apologies if I misunderstood you, I read the post as an assumption that caring for and raising a disabled child would be the same as for a normal child, which it isn't.

Mommy - posted on 03/20/2012

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Tracey, maybe you misunderstood me. I posted a while back that I would not choose to carry out a pregnancy if I knew the child was going to be disabled, for a lot of the reasons you mentioned. But someone then asked what I and another mother would do if we had a child and did not know in advance they were disabled, and they turned out to be, I would love them the same as I love my other child. I would do the best I could, and that's all I could do.

Tracey - posted on 03/20/2012

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I'm with Sherri, there is an enormous impact on the rest of the family bringing up a disabled child. Stats from my Carers Association report that 70% - 80% of parents of disabled children get divorced, 40% end up bankrupt and 30% give up work either to care for their child or because they can't do both. Although we will arrange care for our son when he is older my daughter decided years ago that she will not have children so that she can care for her brother if we die.



I can't say that I would have terminated my son had I known then what I know now, but if I was told I was expecting another (mentally or physically) disabled child I would abort immediately. I knew there was something seriously wrong when my son was born (probably because he was blue and not breathing) but when he was brought to me 1/2 hour later every instinct in my body told me I did not want him near me and even though one inner voice was telling me I was a monster and how I could treat a newborn like that, another voice was telling me to reject him. We didn't sue the hospital despite them being negligent because we were told that any compensation we received meant less money for equipment and other babies would die from lack of incubators etc, had the situation been caused by a doctor lying or witholding information and had I been aware that other people's health would not be affected by my actions then yes I would have sued.



Mommy A You do not love and care for a disabled child the same as normal kids, you use 10 times more energy, whether from many years lack of sleep, or changing teenage diapers, or arranging your family's life around respite, therapy and medical appointments (and thats assuming your child has no health problems). Your daughter will have play dates cancelled because other parents will not want their kids near yours, she may be among the 60% of siblings of disabled who are bullied at school Not a criticism, just a fact.

MeMe - Raises Her Hand (-_-) (Mommy Of A Toddler And Teen) - posted on 03/19/2012

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Thanks Sherri, I was just curious and trying to see it from another's perspective.

Sherri - posted on 03/19/2012

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Well obviously I would have dealt with it but I had the option to find out and have 100% results. So yes I would never know about autism or certain other defects but I could find out about DNA abnormalities 100% and if any of them had come back positive it would have been positively devastating to us, and nothing we relatively ever considered lightly but decided for everyone involved in our family and most of all the child I was carrying that abortion would have been the best option.

MeMe - Raises Her Hand (-_-) (Mommy Of A Toddler And Teen) - posted on 03/19/2012

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Just being a devils advocate here but what if you didn't find out until after the birth? Say, you didn't get a CVS or other testing done past the blood tests. Simply because the blood tests didn't come back with any alarming numbers? Then the baby was born and you found out then. Or it wasn't DS it was severe autism, which often does not show until 18 months.



I am just curious. You don't have to answer.



I was one that also had the blood tests and they came back with high numbers, so I furthered it to a high density ultrasound which lessened the likleyhood but did not dismiss the possibility of DS. I was offered an amnio but declined. My boy is completely fine by the way.

Sherri - posted on 03/19/2012

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Wow Danielle judge much??? Just an FYI this couple had a CVS done and yes it is supposed to be 100% accurate. So they were well within their rights to sue.



Secondly I am one that if we had found out my 4wk old son had had DS in utero would have aborted why? No we were not being selfish anything but. It would not have been fair to the 3 healthy living children we have now to have a child that would have taken us away from them, secondly we could not afford a child that would have medical needs, third and actually most important no one can tell you the severity of the mental retardation and yes downs is a form of mental retardation and we are older parents so when we pass away the child would have to live in a home for the rest of their life. So not fair.

Mommy - posted on 03/19/2012

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Sorry Danielle, but for you that may have been what you chose, but that is not something I need to be judged on. I have very practical reasons for not being able to have a baby that I know would have special needs. And if you think it would be an easy decision, and I am some callous heartless woman, your judgment of me, and women like me, is just as appalling as my decision may be to you. Now I am very happy that you and your family are blessed with a happy and healthy little one, but as I said before when I would not carry to term, I am not in the financial position to give the baby the care they would need, and I also worry about the child I have now having parents that are not able to give her the same attention they would need to give their child with DS or any other developmental issue.



Also, as I mentioned before, I know this is not a popular decision. Or at least not outwardly popular, but it is mine and my husband's decision to make. Others can judge, but unless you are willing to support that child with me, I don't think it is fair for you to call people like me shameful.

Danielle - posted on 03/19/2012

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I am disgusted by the comment made by the parents of "if we would have known we would have terminated". I have a 3 year old that tested positive for DS and we never even considered not giving her a chance, lucky we did because she turned out to be just fine. Shame on the parents for even considering it and shame on the lawsuit as well those test can be false positives and false negatives. It wasn't the hospitals or doctors fault!

Sherri - posted on 03/16/2012

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Okay she had a CVS done which is 100% accurate if done correctly I also had this done when my results came back positive. They stick in a needle into your uterus and take a sample of the babies DNA which if done correctly will 100% tell you if the baby has downs or not.

Sally - posted on 03/15/2012

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I think that this article does not give enough information, so am on the fence about sueing. I also think that unless your faced with this ,you can never say i wouldn't abort full stop. Everyone is differentand whar you can and can't handle is different. I admire mother A for her honesry and can understand her reasonng. Would i abort , don't know having never faced it. Do i agree with sueing ,if information was wrong or with held then yes, if it just cos their disappointed no.

**Jackie** - posted on 03/15/2012

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Mommy A, I really respect you for sharing that. BTW, your profile pic just gave me the biggest smile! :) She is soooo cute!

Mommy - posted on 03/15/2012

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I think it's a difficult decision, and being pregnant now and having done the NT scan recently, my family was upset when I told them I would not have a baby that I knew was going to have a disability. I work a full time job and two part time jobs to help support our family, and could not afford to stop doing that to give a sepcial needs child the care they deserve. I also do not think it is fair to my other child to have parents who give her less attenition because her sibling has special needs that require constant care. That being so, if the child I am carrying now does have a disability, I would certainly love them, but would not choose to birth them, had I been given the prior knowledge and the option.



Again, I know it's not a popular opinion, but unless those that disagree are willing to give me their time and money to care for this child, people shouldn't judge. And this is not a jab at anyone, just personal opinion, and the sentiment I conveyed to my family when challenged about this.

**Jackie** - posted on 03/15/2012

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OH ok ok, I'm caught up now. Sorry Laura. I am trying this new thing where I am keeping an open-mind about things that I am completely against.



I am not one to put myself in someone's shoes, I refuse to. I don't think it's fair for me to say what I would do in a critical situation when I have never been in that situation. Having said that, I am really trying to hear everyone out.



What I do know is that I come from a family with DS and autism etc and when my doctor suggested I get an amniocenteses, I refused. I told him that God wouldn't give me what I couldn't handle...and I still believe that with all of my heart. BUT that doesn't mean that I am going to judge anyone who disagrees, I guess I just want to know your thought process.

Janice - posted on 03/15/2012

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I cant find the specific article I read yesterday, grrrrr, but it stated that the mother went through the initial blood test and ultrasound came back with abnormalities. The doctor discouraged having an amniocentesis but the family decided to one anyway. The amnio came back normal. The family says the test was not done correctly while doctors say that it was but the child has the Mosaics type of DS so many cells are normal which is why the test said she didn't have it.



What I just posted is what I recall not exact quotes.



Anyways, no test is 100%. I completely understand why one may choose to abort if they knew they would not be able to support the child. However, I think suing is crazy! As other's said what happens when the child learns of this when they are older? How horrible for them. If doctors do their job correctly then they shouldnt have to worry about being sued. If the amnio really was done incorrectly then I suppose the lawsuit is justified (though still awful for that child to learn of) but how could they prove that?



As for pro-life doctors possibly lying, I think that it should be required that lab result documents are given to the patient. I think it would be time consuming for a doctor to falsify documents and if there was a question about the doctors intentions it could be checked.

Stifler's - posted on 03/14/2012

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I agree with Laura of course they love their child but they weren't equipped to deal with a disabled child, hence the testing.

Sherri - posted on 03/14/2012

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I agree whole heartedly with you on this one Laura. Because although if something was wrong I would have aborted that in no way meant I didn't love my baby and also if he was already born OF Course I would love him no questions asked.

[deleted account]

I just don't think it was a good idea to put those two sentences in the same article.



I also love how you assume I can't comprehend the idea and that you know how I truly feel on this subject based on one simple observation. That's nice.

Isobel - posted on 03/14/2012

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In order for the two statements to be contradictory and "laughable" is to suggest that it is impossible for both to be true. I suggest it's entirely -reasonable- for both statements to be true.



I think the suggestion Jaime makes implies that IF they were going to abort, then they can't love that baby now...or if they love the baby now, they never would've aborted.



For this implication to be true, the parents would have to be sub-human.

MeMe - Raises Her Hand (-_-) (Mommy Of A Toddler And Teen) - posted on 03/14/2012

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Yes, that's right. In the States it is the doctor's insurance company...

Isobel - posted on 03/14/2012

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That's my point though right? If you have no health insurance in the States you HAVE to sue to survive...it's what their system was built on. Then when people do it everybody freaks out.



Keep in mind that they sue an insurance company, not a doctor.

MeMe - Raises Her Hand (-_-) (Mommy Of A Toddler And Teen) - posted on 03/14/2012

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I suppose in the states maybe, since I am not sure how the system works. In Canada you wouldn't need that much, since the Government chips in a lot for everything...



In Canada you can't "sue" a doctor per se. You would be suing the Government. Since our doctors are ran by the Government. You also do not get very much.



In Canada, the maximum general damages for pain and suffering is ed to inflation and rose from $100,000 to $250,000 between 1978 and 1995.



ETA: According to the Canadian Medical Protective Association, the defence organisation for most Canadian doctors, two-thirds of cases are dismissed or discontinued, a quarter are eventually settled, and in only 3% does judgment go to the plaintiff We also have people that fight for the doctor's here..

Isobel - posted on 03/14/2012

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You'd also have to add in the live in care he'd need when his parents died or became too old to take care of him.

Tracey - posted on 03/14/2012

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Why does a family with a disabled child get $2.9 million. Don't know much about Downs but from my point of view, I have not been able to work and keep a job since my son was born, so assuming he goes into care as an adult thats 20 years of wages gone (let's call that $40,000 a year x 20 is $800,000) which also means not enough contributions to get a proper pension, lets estimate another $200,000, we are up to a million already. Add into that the extra costs of therapy, respite and equipment, the special diet & supplements. Over a lifetime I can see this would easily reach $2.9 million.



Not saying this suit is right or wrong just that I can understand how the figure was reached.

Becky - posted on 03/13/2012

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While I don't agree with the idea of aborting a baby who has DS, my beef really is with the fact that prenatal testing is not 100% effective. Now, if they were lied to or denied testing, then I would feel differently. But the article is missing a lot of detail.

It really does kind of baffle me how this happened. With my last pregnancy, our son had a chorioplexus cyst on his brain. We were first informed by our midwife that it was there and what it might mean. We were offered a follow-up level 3 ultrasound, which we had. The tech told us during the ultrasound that the cyst was gone and everything looked good. Then the perinatologist came in and spent about 15-20 minutes telling us the results and explaining what the cyst could have meant. We were offered an amnio, which we declined, because the chances that our son had DS were not any higher than anyone else's at that point, and honestly, it didn't matter to us if he did. Then my midwife went through the report with us again. And we were given a copy of the report by the perinatologist. So, while there could have been something missed because we didn't have the amnio, the chances of us being misinformed or misunderstanding something were very slim. So, based on our own experience, I guess I can buy that maybe someone did really mess up in this case.

Maybe it's just that I hate the name "wrongful life" suit. It just strikes me as so demeaning to a life that I don't believe has any less value than any other life. I have a hard time wrapping my head around a "wrongful life." Maybe it'd bother me less if it was just called a malpractice or negligence suit.

Sally - posted on 03/13/2012

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oh and on a lighter note. When i first got married i live in Ireland,very catholic. I went to the GP for bc and i quote his very word" the only bc you need is an asprin, put it between your knees and hold it there" thats true story . Thankful its got a little better. Any oh im going to lay my head on the weeping willow and plow the the oceans deep.x

Sally - posted on 03/13/2012

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I was a bit late catching up had to pop away to powder my nose.lol. Yes we get the blood test here but the rest is not recommend or encourged unless there is high risk. Im shocked that one person can decide someones future based on their beliefs. I can honestly say have never heard the likes in the UK. If in this case thats what happened then can only say sorry, got it so wrong. I hate these articles that don't give a complete and clear picture. You always go with your gut and then end up wondering what if. I still think its going to be a lot fo.r their chlc to get his head around when his older. I so wish i knew the whole story

Isobel - posted on 03/13/2012

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See Hot Coffee, the documentary about "frivilous" lawsuits. That'll calm you down a little about the "suing bandwagon"

MeMe - Raises Her Hand (-_-) (Mommy Of A Toddler And Teen) - posted on 03/13/2012

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Sally, ALL Mom's can elect to have the blood work done. It is free (well in Canada). Most doctor's ask if you are interested in having it. From there you get a total of whether there may be a high chance for different disabilities. Then you can move on to the high contrast ultrasound. Then you move on to an amniocentesis. So, everyone can get the ball rolling with the blood tests.



In addition we are not only talking about DS. This thread and the suing is, yes. I don't agree with it at all. However, what if it was a very serious disability? Would you not want to know for sure? What if you were lied to? What if the child was born and the disability such as (Krista - taught me about this one) Tay Sachs? That would be horrible.

MeMe - Raises Her Hand (-_-) (Mommy Of A Toddler And Teen) - posted on 03/13/2012

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It is for sure. One also must remember it is not the OB GYN that would be performing the higher prenatal tests. Those are done at a high risk clinic. So, it could be your OB GYN holding the paper that says Yes there is a problem and lying OR it could be the doctor that performs the tests (then smudges the results). It isn't some nurse that does an amniocentesis, it is an actual doctor. However, it could happen anywhere down the line.



I agree though, it is not common but I guarentee it happens right now... Which is why when ever possible I get 2nd and 3rd opinions. Such as with my daughter and her severe ADHD. I wasn't just throwing her on meds because the first doc said "Yep, she has ADHD, give her meds". That's some serious shit there. Although, you wouldn't be getting a bunch of amniocentesis done, which is why it is best, it is not made illegal to sue if need be.



In this case though, it seems apparent they knew something wasn't right but I can't guarentee since we don't know all the info....

Sally - posted on 03/13/2012

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@meme ,yes we did . Something along the lines of docs legally being allowed to lie to prevent mums aborting. Im pro- choice so if a mum thinks she couldn't manage thats her choice but sueing for what is an act of nature no. Does that mean the young women ( 20's )with no history of any disabiltity etc in the family and is not offered testing should sue because her child is DS. I Repeat something doesn't add up. Too many people involved . I wish i knew what test she had, how many peoples care she was under and why none of them mentioned anything. If it came back that information was with held then i would say good on you but its hard to imagine a whole team of people getting to gether and doing this.





Sorry am banging on but the sueing trend is a bugbare for me.

**Jackie** - posted on 03/13/2012

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In all seriousness...that makes me feel really vulnerable. I mean...you guys don't know this but I went through quite a few doctors before deciding on the one I wanted for my OB GYN when I was pregnant....and to think that he could hold a piece of paper with results on them and look me in the eye and lie is really unsettling. Wow

**Jackie** - posted on 03/13/2012

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Just read the article...I was about to throw my lap top. Thanks for opening my eyes MeMe and Krista! I'm going to go sit in a corner and plot lol

Isobel - posted on 03/13/2012

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I assumed you were shaking your head about me...not the lawsuit.



Anyhoo, I have had a doctor's religious beliefs interfere with my healthcare and it has absolutely tainted my view on these laws being proposed surrounding women's health care.



I wanted to go to a specific gynocologist for care while I was pregnant, and where I am you need a referral from your GP to make an appointment with a specialist. My GP REFUSED to give me a referral because that gynocologist ALSO performed abortions.



I'm a smart enough woman in a large enough community that I was able to figure my way around it BUT...I'm not naive enough to believe that a) it doesn't happen to women in smaller communities who have little or no choice to get around these obstacles and b) there aren't women out there who aren't either smart enough or strong enough to stand up for their rights.

MeMe - Raises Her Hand (-_-) (Mommy Of A Toddler And Teen) - posted on 03/13/2012

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LOL Jackie, I made it easier for ya.. ;)



No proof that it is legal to do but I guarentee it does happen. There are doctors that still abort in places it is illegal, simply because they strongly believe in it. So there are going to be hardcore doctors against abortion too, that will lie to keep birth defects secretive.



However, if these buttheads get their way, it will be legal for doctors to lie and get away with it legally in Arizona... This tells me it is something that is probably already happening. It isn't hard to smudge a test or paper work...

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