I heard on the radio today that a couple in Portland OR had been awarded $3 million because a clinic had assured them that the baby the mother was carrying did not have Down Syndrome. After their daughter was born, she was discovered to have the extra chromosome. The couple say that they would have aborted the baby if they had known of her condition. The couple say that they love their daughter, now 4, and want the clinic to pay for the extra life-time costs of caring for her.
It’s been reported that the couple have received death threats, which may be why their attorney insists:
David K. Miller, the Levys’ attorney, has expressed that this lawsuit was not about whether or not the pregnancy would have been aborted but about the Levys’ love for Kalanit. In a statement to KATU Channel 2 in Portland, Miller explains, “These are parents who love this little girl very, very much. Their mission since the beginning was to provide for her and that’s what this is all about.”
The legal action apparently is an instance of a “wrongful birth” suit. “Wrongful life” suits have also been filed and upheld; in these, a legal guardian for the child itself sues someone else for failing to prevent the child’s birth, e.g., by not providing accurate information on the condition of the child when an abortion was still possible. The suit asks for damages for extra care, special education, etc.
http://www.oregonlive.com/portland/index.ssf/2012/03/portland_couple_sues_legacy_he.html
http://www.imperfectparent.com/topics/2012/03/10/portland-couple-wins-wrongful-birth-lawsuit/
It strikes me that, philosophically, there is something odd about a person’s suing for damages when the alleged wrong is what permitted the person to be in a position to file the suit (or do anything else in the course of a life)!
But my brain is not working well at the moment, so clarifications from others would be welcome.
I heard on the radio today that a couple in Portland OR had been awarded $3 million because a clinic had assured them that the baby the mother was carrying did not have Down Syndrome. After their daughter was born, she was discovered to have the syndrome. The couple say that they would have aborted the baby if they had known of her condition. The couple say that they love their daughter, now 4, and want the clinic to pay for the extra life-time costs of caring for her.
It’s been reported that the couple have received death threats, which may be why their attorney insists:
that this lawsuit was not about whether or not the pregnancy would have been aborted but about the Levys’ love for Kalanit. In a statement to KATU Channel 2 in Portland, Miller explains, “These are parents who love this little girl very, very much. Their mission since the beginning was to provide for her and that’s what this is all about.”
The legal action apparently is an instance of a “wrongful birth” suit. “Wrongful life” suits have also been filed and upheld; in these, a legal guardian for the child sues someone for failing to prevent the child’s birth, e.g., by not providing accurate information on the condition of the child when an abortion was still possible. The suit asks for damages for extra care, special education, etc. Here and here are articles.
It strikes me that, philosophically, there is something odd about a person’s suing for damages when the alleged wrong is what permits the person to be in a position to file the suit (or do anything else in the course of a life)! Clarifications from others on the legal issues in both types of suit would be welcome.
Aside from the emotional aspect of parents saying they would have aborted their child had they known she had Down syndrome and the whole “wrongful birth” language, which is somewhat inflammatory, I wonder how this is any different from anyone getting a false negative on any lab test.
As I understand it from poking around in the medical databases through my college library, CVS can have a 1 to 4 percent false negative result depending on whether the lab uses short- or long-term cultures for the procedure.
That’s a pretty accurate test when you consider that Pap tests have a 20-49 percent false negative result. Where women have sued because they received false negatives–sometimes several in a row–the cases seem to be judged, among other factors, on the lab’s track record overall. That is, the lab is judged on whether it yielded many false negatives for many women, not a few false negatives for one individual.
Perhaps that same standard would apply here?
Having had a child at an “advanced maternal age” and the attendant screening, testing, and monitoring that goes along with it, I have to say that at every turn, I was always cautioned that “nothing is 100 percent conclusive.” If Mrs. Levy is 39 now, then she was 34 or 35 when the baby was conceived, and my suspicion is that younger women, especially those who already have healthy children, get less of that cautionary treatment and feel more betrayed when the “promised” child does not arrive.
In any case, I feel very sorry for any parents who have a special needs child they struggle to provide care for.
Fr. Komonchak–
As you note, wrongful birth suits are brought by the parents. They are based on the doctor-patient relationship between the doctor and the mother, and they allege negligence by the doctor, in essence that there was medical malpractice. About 50% of the states in the U.S. allow wrongful birth suits.
Wrongful life suits are brought by the child, not the parents, through a legal guardian. There was no doctor-patient relationship between the doctor and the child, and the child is limited to damages that are economic in nature (e.g., costs of treatment). Pain and suffering is not a damages component in such suits, which are permitted in only about a half dozen states, if I remember correctly. One reason some states do not permit this legal cause of action is for exactly the reason you mentioned, i.e., “there is something odd about a person’s suing for damages when the alleged wrong is what permits the person to be in a position to file the suit (or do anything else in the course of a life).” Most courts don’t want to become entangled in what they consider a metaphysical question.
So we’ve progressed from accepting children as gifts from God to looking upon them as damages. Maybe the bishops are on to something when they talk of the perils of artificial contraception. It wasn’t like this before, was it?
For ordinary middle-class parents it is very difficult to provide adequate financial support for a child with special needs. The lawsuit may be the only way they have to protect their child when they are gone.
It is distressing, but it doesn’t necessarily mean that the parents don’t see the child as a gift. It may only mean that they understand that our society treats people with cognitive disabilities badly.
Ann–
I hope you’re right about the parents true intentions, but I’d feel better if the money were put in a trust for the child’s exclusive benefit.
If we had universal basic healthcare, would this be an issue? If not, then it seems the real issue is that we need basic healthcare in order to support our goal of a seamless garment.
Carolyn, if we had universal health care, with the government making and enforcing the rules, there would likely be few Downs Syndrome births – and none intentional.
David,
Your comment shows a great deal of ignorance about how universal health care operates. Every European nation offers some form of universal health care and none of them mandate that pregnant women terminate children with birth defects like Down’s Syndrome. All of them leave the decision up to the parents.
In deciding whether to have a child with Down’s Syndrome, numerous factors come into play including a person’s religious beliefs, the ease of taking care of the child due to family and governmental support (or the lack thereof), and the degree to which the child will be accepted. The ability to do prenatal testing for Down’s Syndrome has only been around since 1989. During that time in the United Kingdom, which has universal health care, the number of Down’s Syndrome births in 1989 was 717, it dipped to 594 in 2000 but then rose to 749 in 2006. The reason for the increase, according to a BBC article, was because more parents were willing to have the child (even after pre-natal screening had revealed that it had Down’s Syndrome) because of the improved living conditions for people with Down’s Syndrome due to increased inclusion and acceptance of such individuals. See http://news.bbc.co.uk/2/hi/health/7741411.stm
Elizabeth, universal health care isn’t something that exists in just one form all over the world. It doesn’t exist here, yet, at all, except as an extremely costly and wasteful congeries of government services and mandates.
The fact is that in democracies, governments do what’s popular. If mandating prophylactic abortion should become popular, laws and regulations will follow, here and elsewhere. There’s absolutely nothing to prevent that.
And please note this, from wikipedia (footnote marks removed for readability):
Both the USCCB and Vatican have, for many years, called for universal healthcare as a basic human right, including health care for immigrants. I applaud the efforts to help make this a reality in the US, and am not afraid that if we offer healthcare to Down’s children “the government” will begin mandating abortion.
“It wasn’t like this before, was it?
No, indeed. My grandmother talked about how midwives often wrapped cords around the necks of babies that had “defects” so they weren’t a burden on the family. The ones who lived were warehoused in horrific institutions.
So, we can deplore abortion and all that. But perhaps we ought to remember that hospitals now try to save children with special needs like my just-born great-nephew, and the institutions are largely gone.
People with Down syndrome do need more medical attention than others, and for that and other reasons, universal healthcare will probably help them. With early intervention many people with Down syndrome have far fewer limitations than people think, but it is still difficult for a young adult with Down syndrome to find employment and to build an independent social life.
Until fairly recently most people with Down syndrome died in their teens or soon after.
This is one example of how prenatal testing sets up the false expectation of perfect children. As a family doctor who used to deliver babies as part of my practice, I offered these tests to my patients but discouraged them. Initial screening tests deliver a lot of false positives, which create anxiety for expectant families. Even when further testing contradicts the initial positive, many women feel a bit traumatized by the experience.
I am 39 now and expecting my third child in September. Because my husband and I will accept any baby given to us as a gift of God, I’ve declined prenatal testing. People should know that this is an option.
David, There is only one caveat I’d add to your comment. Most Down’s Syndrome babies are already aborted. So the world you envision is already here; our ‘congeries of government services and mandates’ seem to already include testing.
“An estimated 92 percent of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children’s Hospital Boston.”
Here are a couple of links if people are interested in finding out more about Down syndrome or if they would like to help out:
http://www.nads.org/
http://www.ndss.org/
My parents raised a DS daughter in the 1940s and 1950s when and where there were no special schools, little to no medical knowledge about the causes, and virtually no support structures.
It is infinitely easier to do so now, but that doesn’t mean that it is any great thrill to do it.
That said, I never remember my parents saying that they wished their daughter had never been born, or regretted what had happened. My sister’s 2 siblings had a rough time until we grew up enough to realize how delightful Karen could be and what a blessing she truly was and is.
Even in this day and age we are still caring for her with the wonderful advantage of 100% support from the state of Iowa and an organization called Area Residential Care.
Bruce, you said “So the world you envision is already here; our ‘congeries of government services and mandates’ seem to already include testing.” But you forgot to specify that prenatal testing is neither a government service nor a mandate. People have arrived at this all on their own.
If universal healthcare can have a positive impact here, it seems so completely worth it to me.
Thanks for your comments, Dr. Russell.
At the Physicians for Life website is the following quote from a Canadian Catholic organization opposed to genetic screening for Down Syndrome:
“‘This places parents in the position of making life-death decisions based on their own preferences, fears, and guesses about the future quality of their own lives and their children’s. Yet human life is worth more than a series of rational calculations. So many Canadians with an illness or disability have made a positive contribution to our lives. Such people remind us that perfect health and a normal IQ are not required for happiness, friendship, and love of life. Rather than offering the parents of these children a way of eliminating their unborn, we should be providing them with more resources and support.’”
http://www.physiciansforlife.org/content/view/1301/26/
If perceived imperfections are an acceptable basis for aborting the unborn, then eugenics is truly alive and well. If a Down Syndrome fetus can be aborted because of the burden (either real or imagined) it will place on a family, then what is to prevent the practice of aborting female fetuses in societies (e.g. China, India) where the birth of a daughter is sometimes regarded as an economic burden on a family and society in general? I don’t see any qualitative difference between the rationales offered for aborting the physically-impaired and the gender-impaired. Both are equally abhorent to me.
I think it’s a mistake to view genetic screening as the problem and to deny it to people for fear it will cause them to abort. Without the screening, many women in high risks groups might abort as a matter of course rather than waiting to find out if they’re carrying a child with a genetic condition.
Based on my own personal experence–history of many miscarriages in my 30s and learning I was unexpectedly pregnant at age 41–it seems to me the better solution is to provide good information about what having a child with a genetic condition such as Down syndrome might entail so as to help parents prepare to welcome their child.
That’s a good point, Jean. At the website I linked, there is a summary of a Harvard Medical School study:
“In a 2004 study out of Harvard Medical School, researcher Brian Skotko found that women in this situation felt anxious and scared when learning of the diagnosis, and about half felt rushed or pressured into making a decision about continuing the pregnancy. Their feelings may have been partially influenced by the doctor’s approach. Most health care providers tend to assume that if a woman consents to prenatal screening or diagnosis, she is willing to discuss abortion as an option. Also, many doctors in these cases may see advantages in ending the pregnancy as soon as possible to avoid the medical risk to the woman of a late abortion. Combine this predisposition with the perceived ‘burden’ of raising a child with Down syndrome, and many women could convince themselves that abortion is their most prudent ‘choice.’
To counteract this effect, it is also true that doctors presenting the prenatal diagnosis can positively influence the outcome if they provide balanced information about DS. The same Harvard study found that mothers who chose to continue their pregnancy after a prenatal diagnosis of Down syndrome did so for personal reasons such as conscience and religion, but also because they had gotten information about Down syndrome, either in printed materials or from talking to a parent of a child with DS. However, most of the mothers felt that their doctors did not explain DS adequately and in a balanced fashion. They suggested that doctors and genetic counselors should convey consistent, accurate and sensitive messages about life with a child with DS, and that doctors, nurses and hospitals should provide contacts with local DS support organizations.”
I agree that prenatal testing should be offered to women, but not presented as a routine test on a par with performing a blood count or checking immunity to rubella (standard blood tests done as a matter of routine at a 1st OB visit).
When I have counseled my prenatal patients about (for instance) the triple screen done at 14-18 weeks, I stressed that it was an optional test, that if positive would simply mean that further testing was required, and that if abortion was not something they would consider, it would be easier for most to cope with the knowledge of having a disabled child when the child is in the arms rather than visible only on the ultrasound machine.
“To counteract this effect, it is also true that doctors presenting the prenatal diagnosis can positively influence the outcome if they provide balanced information about DS. The same Harvard study found that mothers who chose to continue their pregnancy after a prenatal diagnosis of Down syndrome did so for personal reasons such as conscience and religion, but also because they had gotten information about Down syndrome, either in printed materials or from talking to a parent of a child with DS.”
Those women who get info BEFORE the diagnosis are smart, and there is nothing wrong with asking one’s OB to provide info; I’m sure mine would have had I asked, but I think he was afraid to raise specters with an already freaked-out parent-to-be.
Carolyn,
Hang in there! I am only guessing, of course, but David’s ability to express a very fine and eloquent bit of righteousness indicate to me he has never been the one who dealt daily, and nightly, with the truly soul and body wrenching challenges of a tragically struggling child. It is at once a welcome test of failth and a brutal path to follow. It might be of help to you to recall a brief speech given by ole’ Abe quite a while back. With him on that stage was another fellow who rambled on for several hours, quite eloquently I might add. In time, both men were given their proper place in history.
Straw-man alert. It’s not a mistake to view genetic screening as a problem, and no sensible person would try to deny it to people for fear that it will cause them to abort.
“If we had universal basic healthcare, would this be an issue? If not, then it seems the real issue is that we need basic healthcare in order to support our goal of a seamless garment.”
In order to think about this, we’d need to determine the following:
* How seamless is the status quo? The quote from the plaintiff’s attorney, provided by Fr. K, implies that there is no support available for parents of Down Syndrome children, but that is not true. I am not an expert on this, and perhaps there are commenters here who can speak knowledgeably, but there are existing state laws in most/all states that provide a certain baseline of services. Is that baseline sufficient? In addition, some local communities go farther than the state’s minimum baseline. I personally know of families who have moved from one town or school district to another in order to be in a place to provide their children the optimum support. Having to move to find better services is a large burden, to be sure, and may not be possible for some families. So we have unequal distribution of services, istm, and we need to determine whether or not that is just.
* What would a national health care plan provide by way of support for Down Syndrome families, and for families of children with other special needs? My impression is that, as with any national legislation, there would be ‘winners’ and ‘losers’. Ultimately, there is a finite source of funding available, and there would not be sufficient funding to give every patient of every ailment all of the treatments and services they could wish for. Would DS families by ‘winners’ or ‘losers’? Would, e.g., breast cancer advocates, or AIDS advocates, or even contraception advocates, be willing to accept a little less so that DS families could have a little more? Hashing out questions like that seems to me one of the unattractive realities of nationalized medicine.
Indeed. A single-payer health-care system would be a wonderful thing for most people most of the time. But there would be enormous downsides. And no amount of “hashing them out” could fix them. They’d be an integral part of the package.
“I think it’s a mistake to view genetic screening as the problem and to deny it to people for fear it will cause them to abort.”
“Straw-man alert. It’s not a mistake to view genetic screening as a problem, and no sensible person would try to deny it to people for fear that it will cause them to abort.”
Oh, dear. I’m stupid again. I certainly cannot prove that genetic screening has SAVED some fetuses that might have been aborted b/c the tests came back negative, but I think it’s a POSSIBILITY to be considered. Genetic screening is only a problem if people use it to decide whether to abort a fetus.
It COULD be used to help parents prepare for children with very severe genetic conditions. If, for example, a child will be born with spina bifida, the parents could find out what kind of equipment and special care they might need to provide for the baby. In some instances, in-utero surgery can correct spina bifida, which can’t be done once the baby is born. Or parents expecting a child with cystic fibrosis could get training on the various techniques they would need to cope with that illness.
So, Catholics, instead of trying to discouraging women from having genetic testing and just telling them to view it all as a gift, perhaps parents need sympathetic people to help us understand how to use the information genetic tests provide in a Christian way.
Any move to universal health care provided by the U.S. government would probably create a system that looked like the systems in Western Europe. Yes, there is a range of options offered – from the government owning most of the hospitals and employing many of the doctors as in the UK to all of the hospitals and doctors being privately own and run and the government providing insurance to cover the costs of using them as in Germany. If the US ever adopted a universal health care system, I suspect that the US would ended with a German-style system rather than a UK-style system given the strength of our insurance sector. The German system provides better outcomes (long life expectancies, lower infant mortality, etc.) than the current U.S. system and at lower costs.
None of these systems mandate prenatal screening — it is offered but not required. In fact, 40% of women in the UK who had Down’s Syndrome children did not undergo prenatal screening. None of these systems mandate abortions if the prenatal screening reveals the possibility of birth defects like Down’s Syndrome. If a pregnancy is terminated following prenatal screening, it is because the parents decided to do so, not the doctors or the government. (Keep in mind that the screening only reveals the possibility of a child with Down’s Syndrome and it isn’t 100% accurate. Screening entails a certain number of false postives and false negatives. )
In all of these systems, one can still buy additional health insurance or pay to see doctors out of one’s own pocket. The systems act as a very sturdy floor to provide a level of care that most middle class and poor people could not otherwise afford. These systems take very good care of people with disabilities. For example, Stephen Hawkings, who has had Lou Gehrig’s disease for 40 years, has pointed out that he would not be alive today without the services provided by Britain’s National Health Service. See http://www.telegraph.co.uk/news/worldnews/northamerica/usa/6017878/Stephen-Hawking-I-would-not-be-alive-without-the-NHS.html
A basic premise of any screening test is that it’s not done until and unless a medical intervention can be performed based on the results that will benefit the patient. It’s poor public health policy to screen for a condition just so a patient knows in advance about a medical diagnosis nobody can do anything about. With regard to prenatal screening tests (and by this I mean the work up that leads to the diagnosis of trisomy 21 and neural tube defects), the only intervention that can be staged prenatally is abortion. The very rare fetus whose defect is significant enough to be corrected prenatally can almost always be caught on routine ultrasounds- the kind that nearly everyone gets multiple times during pregnancy these days.
Finding out if an infant has Downs or spina bifida at birth gives parents plenty of time to adjust to the information- and is much easier to handle and cope with when the baby is in arms. Medically there is very little difference between well child care for a child with Downs vs an infant without at birth.
No doubt information about Downs can be given in a more neutral and helpful fashion by perinatologists and genetic counsellors, but the fact that over 90%of these babies are aborted should tell you something about how the diagnosis is generally handled.
I appreciate Mary’s willingness to engage on this topic and provide her medical expertise. I did not know that a routine sonogram could reveal spina bifida.
Certainly, I can see where a pro-life doctor might want to believe it is “easier” to cope with a baby with a genetic defect when the baby is “in arms” because it means that the doctor has prevented a possible abortion.
But whether parents across the board find it “easier” to cope strikes me as debatable.
Consider: Our genetic counselor spent many hours taking family histories from both my husband and me and, at one point, mentioned that my kid would probably be at higher risk for clinical depression, alcoholism, and certain types of cancers than for Down syndrome. I grew up in a family where these conditions had a devastating effect. Her remark did not make me want to abort. It did make me feel incredibly guilty (not her intention), which allowed me to work on that before the baby was born. It also allowed me to consider how I might parent my child to counteract some of that toxic genetic cocktail I passed on.
So having someone raise that possibility early on was actually pretty helpful.