This is a list of recent articles with brief summaries on this topic.
from ABC News:
The parents of a four-year-old Oregon girl with Down syndrome are suing Legacy Health in Portland because they say doctors misdiagnosed their daughter as not having the condition during a prenatal screening.
As a result of doctors’ reassurances, according to KATU, the parents decided to continue the pregnancy. They are suing for $7 million, an amount they say will pay for the girl’s care for life.
Court documents were not immediately available, so 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.”
Neither the hospital nor the couple would comment on the case, which is now being heard in a Multnomah County court.
from NY Daily News by Meena Hart Duerson:
A Portland, Ore. couple was awarded $2.9 million on Friday for the care of their Down syndrome baby, who they argue would not have been born if doctors had not been "negligent” in their pre-natal care.
Ariel and Deborah Levy won their "wrongful birth" suit against Legacy Health System, arguing they chose to continue their pregnancy based on what doctors told them, according to ABC News, and would have terminated it if they had not been assured their baby did not have the genetic condition.
Jurors found five instances of Legacy Health's negligence, including a doctor's finding that the baby had a normal chromosomal profile based on a test that was performed and analyzed incorrectly.
from The Orange County Register by Jo Ashline:
My main point is, Mr. and Mrs. Levy, your daughter is ALREADY HERE. And she’s NOT STUPID. If she doesn’t already sense it by the resentment made clear by your suit requesting damages for the strain she has placed on your relationship, someday she will most certainly hear about it through other means and her heart will break. I can think of only a handful of things worse than the pain of a child learning that her parents would have preferred she not exist because of the way she is.
Hey. I’m no hypocrite. I’ve talked openly about the early days of Andrew’s autism and epilepsy diagnoses; I’ve talked about having to grieve the child I thought I would have in order to accept the little angel I was given. But even on my worst days as a mom (and there are plenty, folks) I could never imagine not choosing him over a potentially easier version. In fact, I would choose him every single time.
Does that make me better than you Mr. and Mrs. Levy? No. I don’t think so. I may judge your decision to file this suit and the way you have chosen to publicly go on record and claim that your daughter should have never been born (your lawyer can spin it anyway he wants to but if it looks like a duck, swims like a duck and quacks like a duck, it’s probably a stupid freaking duck), but I do not claim to have ever walked a day in your shoes as Kalanit’s mom and dad.
from babble by Danielle Sullivan:
We take a lot of tests during pregnancy to ensure that our babies are healthy. Sometimes, a positive outcome on certain tests, like the one for Down Syndrome, might cause some couples to abort the baby rather than face a life of disability. An Oregon couple said they would have done just that had they’d known that their daughter would be born with Down Syndrome. But after being assured by their doctor that the baby was free of the genetic disease, they went on with the pregnancy, and their daughter was born with Down Syndrome 4 years ago. After suing Legacy Health System, Ariel and Deborah Levy were recently awarded $2.9 million in a “wrongful birth” suit.
The couple says they clearly would never have had this child if they knew, and now they will use the money to help care for their daughter’s special needs. This type of case going to trial is rare, partly because of the repercussions of parents testifying that they would have aborted their child if they had known (and you can just imagine the long-term mental damage that testimony might do to a child as he/she grows up).
from the Daily Mail:
The case could have far-reaching - and questionable - implications for children born with with conditions such as Down's.
There are fewer than 10 'wrongful birth' cases in the U.S. every year as prenatal tests are 99.7 per cent accurate - and few parents want to face a legal challenge if they do fail, the Oregonian reported.
Yet experts believe there could be a boom in the lawsuits as women in their late 30s and 40s are increasingly having babies and relying on genetic screenings to signal problems, the paper added.
Civil engineer Ariel and dental hygienist Deborah, who say they love Kalanit and intend to give her the same opportunities they have given their sons, were stunned when hospital staff told them she appeared to have Down's.
After their daughter was born with the syndrome, the Levys expressed their fears over her future, including medical and social issues, and whether she would get the required educational support.
Experts have told them she will probably not be able to live on her own or support herself, the Oregonian reported. It is estimated she will live until her mid-50s.
She is able to speak in two-word sentences which only her parents and a few others understand, according to the Oregonian.
Yet the Levys say Karen Gaffney, who has Down syndrome and earned a Portland Community College degree, is a role model for their child.
from Chicago Now by Jenna Myers Karvunidis:
What is not right, however, is the backlash. The couple is receiving death threats! What is up with internet people out for blood lately? Is the economy stressing people to the max so they take out their frustrations on people they don't even know? You can disagree with someone's decision without calling for their demise. The big go-to insult for me in recent weeks has been to call child protective services on me. "Call DCFS!" is the new, "yo mama so fat!" My big crimes were not wanting guns in the house (creating an unsafe environment, according to one vocal gun nut) and not scrutinizing Nick Jr.'s motives in retiring a cartoon moose. Yes, my children suffer terribly from both of those things.
Conclusion: I don't agree with the lawsuit, but these people are just handling their business and don't deserve harassment.
from Komo News:
"Not doing harm is of great importance to most clinicians, because that's why they have gone into the profession," she said. "The reading of some of these tests can be complex."
And so are the moral questions surrounding this type of decision, she said: "We understand much more about early education for these children and how to help them in the world."
The Northwest Down Syndrome Association said regardless of parents' final decisions, they usually deserve more information than they're getting now.
"What life is like for having a child with Down syndrome at the same time there's a huge increase in testing but no huge increase in good information on what life can be like," said Angela Jarvis-Holland.
from Northwest Cable News by Frank Mungeam:
"My clients had two children, this was a surprise pregnancy and they were doing like any responsible couple would do - trying to find out what the status of this pregnancy was," said their attorney, David Miller.
Because of markers indicating a risk of Down syndrome, "she repeatedly called the clinic and said 'Do I need to be concerned about this?' And was repeatedly advised no you don't because the CVS (Down syndrome) test was normal."
After the verdict, Legacy released this statement: "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."
from MSNBC by Art Caplan, Ph.D:
Legacy's attorney said Jenkins and other staff followed proper procedures and weren't at fault. Attorney Robert Keating said the CVS found only normal cells because Kalanit has mosiac Down syndrome -- meaning a significant number of her cells don't contain an extra 21st chromosome. Keating pointed to an analysis of Kalanit's cells -- taken after birth -- that showed nearly 31 percent are normal.
But the Levys' attorney told jurors they should discredit that analysis because it had been done by a Legacy lab looking to defend its legal position. Miller argued that 100 percent of the cells analyzed in the CVS were normal because they were Deborah Levy's cells. Meanwhile, other samples of tissue taken from Kalanit after she was born show an insignificant number of normal cells, less than one or two percent.
from imperfect parent by Melissa Schwartz:
Robert Keating, Legacy’s attorney, contends that the test results were accurate because Kalanit has a mosaic form of Down Syndrome where a significant number of her cells do not contain the chromosomal abnormality.from ABC News:
The parents of a four-year-old Oregon girl with Down syndrome are suing Legacy Health in Portland because they say doctors misdiagnosed their daughter as not having the condition during a prenatal screening.
As a result of doctors’ reassurances, according to KATU, the parents decided to continue the pregnancy. They are suing for $7 million, an amount they say will pay for the girl’s care for life.
Court documents were not immediately available, so 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.”
Neither the hospital nor the couple would comment on the case, which is now being heard in a Multnomah County court.
from NY Daily News by Meena Hart Duerson:
A Portland, Ore. couple was awarded $2.9 million on Friday for the care of their Down syndrome baby, who they argue would not have been born if doctors had not been "negligent” in their pre-natal care.
Ariel and Deborah Levy won their "wrongful birth" suit against Legacy Health System, arguing they chose to continue their pregnancy based on what doctors told them, according to ABC News, and would have terminated it if they had not been assured their baby did not have the genetic condition.
Jurors found five instances of Legacy Health's negligence, including a doctor's finding that the baby had a normal chromosomal profile based on a test that was performed and analyzed incorrectly.
from The Orange County Register by Jo Ashline:
My main point is, Mr. and Mrs. Levy, your daughter is ALREADY HERE. And she’s NOT STUPID. If she doesn’t already sense it by the resentment made clear by your suit requesting damages for the strain she has placed on your relationship, someday she will most certainly hear about it through other means and her heart will break. I can think of only a handful of things worse than the pain of a child learning that her parents would have preferred she not exist because of the way she is.
Hey. I’m no hypocrite. I’ve talked openly about the early days of Andrew’s autism and epilepsy diagnoses; I’ve talked about having to grieve the child I thought I would have in order to accept the little angel I was given. But even on my worst days as a mom (and there are plenty, folks) I could never imagine not choosing him over a potentially easier version. In fact, I would choose him every single time.
Does that make me better than you Mr. and Mrs. Levy? No. I don’t think so. I may judge your decision to file this suit and the way you have chosen to publicly go on record and claim that your daughter should have never been born (your lawyer can spin it anyway he wants to but if it looks like a duck, swims like a duck and quacks like a duck, it’s probably a stupid freaking duck), but I do not claim to have ever walked a day in your shoes as Kalanit’s mom and dad.
from babble by Danielle Sullivan:
We take a lot of tests during pregnancy to ensure that our babies are healthy. Sometimes, a positive outcome on certain tests, like the one for Down Syndrome, might cause some couples to abort the baby rather than face a life of disability. An Oregon couple said they would have done just that had they’d known that their daughter would be born with Down Syndrome. But after being assured by their doctor that the baby was free of the genetic disease, they went on with the pregnancy, and their daughter was born with Down Syndrome 4 years ago. After suing Legacy Health System, Ariel and Deborah Levy were recently awarded $2.9 million in a “wrongful birth” suit.
The couple says they clearly would never have had this child if they knew, and now they will use the money to help care for their daughter’s special needs. This type of case going to trial is rare, partly because of the repercussions of parents testifying that they would have aborted their child if they had known (and you can just imagine the long-term mental damage that testimony might do to a child as he/she grows up).
from the Daily Mail:
The case could have far-reaching - and questionable - implications for children born with with conditions such as Down's.
There are fewer than 10 'wrongful birth' cases in the U.S. every year as prenatal tests are 99.7 per cent accurate - and few parents want to face a legal challenge if they do fail, the Oregonian reported.
Yet experts believe there could be a boom in the lawsuits as women in their late 30s and 40s are increasingly having babies and relying on genetic screenings to signal problems, the paper added.
Civil engineer Ariel and dental hygienist Deborah, who say they love Kalanit and intend to give her the same opportunities they have given their sons, were stunned when hospital staff told them she appeared to have Down's.
After their daughter was born with the syndrome, the Levys expressed their fears over her future, including medical and social issues, and whether she would get the required educational support.
Experts have told them she will probably not be able to live on her own or support herself, the Oregonian reported. It is estimated she will live until her mid-50s.
She is able to speak in two-word sentences which only her parents and a few others understand, according to the Oregonian.
Yet the Levys say Karen Gaffney, who has Down syndrome and earned a Portland Community College degree, is a role model for their child.
from Chicago Now by Jenna Myers Karvunidis:
What is not right, however, is the backlash. The couple is receiving death threats! What is up with internet people out for blood lately? Is the economy stressing people to the max so they take out their frustrations on people they don't even know? You can disagree with someone's decision without calling for their demise. The big go-to insult for me in recent weeks has been to call child protective services on me. "Call DCFS!" is the new, "yo mama so fat!" My big crimes were not wanting guns in the house (creating an unsafe environment, according to one vocal gun nut) and not scrutinizing Nick Jr.'s motives in retiring a cartoon moose. Yes, my children suffer terribly from both of those things.
Conclusion: I don't agree with the lawsuit, but these people are just handling their business and don't deserve harassment.
from Komo News:
"Not doing harm is of great importance to most clinicians, because that's why they have gone into the profession," she said. "The reading of some of these tests can be complex."
And so are the moral questions surrounding this type of decision, she said: "We understand much more about early education for these children and how to help them in the world."
The Northwest Down Syndrome Association said regardless of parents' final decisions, they usually deserve more information than they're getting now.
"What life is like for having a child with Down syndrome at the same time there's a huge increase in testing but no huge increase in good information on what life can be like," said Angela Jarvis-Holland.
from Northwest Cable News by Frank Mungeam:
"My clients had two children, this was a surprise pregnancy and they were doing like any responsible couple would do - trying to find out what the status of this pregnancy was," said their attorney, David Miller.
Because of markers indicating a risk of Down syndrome, "she repeatedly called the clinic and said 'Do I need to be concerned about this?' And was repeatedly advised no you don't because the CVS (Down syndrome) test was normal."
After the verdict, Legacy released this statement: "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."
from MSNBC by Art Caplan, Ph.D:
The very fact that such a case can make it into a courtroom reveals a lot that is wrong with public policy and ethics in America.
The Levys are not alone in saying that they would not have had Kalanit. Studies show that more than 85 percent of parents who learn through prenatal testing that a fetus has Down terminate the pregnancy.
Wrongful birth lawsuits are rare. The tests are highly accurate and mistakes are uncommon.
If a test fails to detect a serious problem and the parents want to sue the lab, doctors or hospital, the parents have to go to court and argue in a public forum that they would not have had their child if they had known. They have to try and put a dollar value on the “harm” they feel they have suffered.
These are claims that very few parents are willing to make in the privacy of their own home, much less a courtroom.
Moreover, those bringing wrongful birth lawsuits have to do so knowing that their family and friends are watching and judging them.
They risk leaving their other children (the Levys have two sons) wondering if their parents really wanted them.
Wrongful birth lawsuits are a horrible way to deal with failed prenatal testing. Forcing parents to argue that their child never should have been born may make legal sense but it is morally absurd.
Why ask parents to reject the existence of their own child? Who can really put a value on a life that some argue in court ought not exist?
There is no reason to permit wrongful birth or wrongful life cases. When a mistake is alleged about genetic testing there ought to be some sort of no-fault insurance scheme under the supervision of neutral mediators, not a courtroom slugfest that demeans the value of a life with disability and reeks of eugenics.
from Oregonian by Aimee Green:
Miller, the Levy's attorney, contends that Dr. Thomas Jenkins removed maternal tissue -- not fetal tissue --from Deborah Levy's womb. The suit faults Jenkins and lab workers for not recognizing that the tissue was from the mother. The suit also faults Legacy for reassuring her that her baby didn't have an extra 21st chromosome even though two ultrasounds allegedly raised red flags by showing traits of Down syndrome. from Oregonian by Aimee Green:
Legacy's attorney said Jenkins and other staff followed proper procedures and weren't at fault. Attorney Robert Keating said the CVS found only normal cells because Kalanit has mosiac Down syndrome -- meaning a significant number of her cells don't contain an extra 21st chromosome. Keating pointed to an analysis of Kalanit's cells -- taken after birth -- that showed nearly 31 percent are normal.
But the Levys' attorney told jurors they should discredit that analysis because it had been done by a Legacy lab looking to defend its legal position. Miller argued that 100 percent of the cells analyzed in the CVS were normal because they were Deborah Levy's cells. Meanwhile, other samples of tissue taken from Kalanit after she was born show an insignificant number of normal cells, less than one or two percent.
from imperfect parent by Melissa Schwartz:
from First Things by Wesley J. Smith:
There should be no such thing as a “wrongful life” or “wrongful birth.” But lawsuits are filed from time-to-time seeking damages because a baby was born that the parents would have destroyed in the womb “had they only known.” For example, a few months ago we discussed one such case in Israel. These cases are different than a legal malpractice suit in which the actions or inactions of the doctor caused the illness or disability. Rather, the claim is that the child would have been aborted if the parents had been properly told about the nature of the baby that they received.
“We love her totally but would have killed her before she was born?” I hope never learns that her parents brought this case. And I hope the jury rejects it out of hand. Doctors are not guarantors of outcomes. We don’t–or at least shouldn’t–have a right to the baby we want. Most importantly, none of us should ever be declared in law to have been wrongfully born.
Another excellent post on this case at:
ReplyDeletehttp://crybelovedcountry.com/2012/03/wrongful-birth-and-frodos-hard-quest/