Saturday, March 31, 2012

Life is good

A fine essay on "wrongful life" lawsuits by the mom of a little girl with Down's sydrome. 


  1. Michael,

    You still don't get the point. The Oregon couple had a screening test (amniocentesis and chorionic villus sampling for cytogenetic examination), which should be 100% reliable and accurate, in order to detect significant non-remedial abnormalities, such as trisomy 21.

    The test result showed no abnormality, and presumably the cells were maternal, not fetal.

    The reason for doing a screening test is to discover abnormalities as early as possible in pregnancy to consider termination of the pregnancy if the parents so desire. There's no purpose in doing amniocentesis for interest sake, if the parents are opposed to abortion, as in the case of CrusadeRex and his wife, because it has some risks.

    The $3 million damages were partly for negligence. Agreed, children with trisomy 21 can be delightful and a joy. Charles and Emma Darwin's last child Charlie is thought by many to have had trisomy 21, although the condition wasn't clinically described until much later, and his parents were devastated by his death at the age of 2. So much so, that his father wasn't able to attend the last meeting of the Linnean Society in 1858 at which his and Wallace's paper were read.

    It's the parents' right to decide if an elective abortion is right for them. They had a screening test to detect such conditions as trisomy 21. They suffered an injury for which the court decided that there was negligence, so therefore they were awarded damages.

    You don't have any justification in assuming that the parents are going to be splurging the money on a large house with pool and large cars, as you did in the original thread. Perhaps the parents are going to put a large portion of the money into trust for the child to finance small group accommodation later when the parents are unable to care for the adult daughter.

    I don't know whether that's the case. But I have as little support for my thinking as you do for yours.

    It's a case of medical negligence with foreseeable causes and predictable results. It's a wake up call for doctors who provide this service to take measures to ensure that it doesn't happen again, or they'll have to pay damages.

    The parents claimed that only maternal cells were obtained. The cytogenetics lab could respond in future by having a policy that if the result yields normal female, DNA testing is then done to ensure that the 'foetal' cells aren't identical with those of the mother, and have a component indicating a paternal contribution.

    The hospital did have a defense, rejected by the court, that the child was a mosaic trisomy 21. At some point after fertilization, one line of cells forming the fetus acquired an extra chromosome, and one line forming the placenta remained normal, so only normal cells were obtained.

    If cytogenetic labs had a routine policy of DNA testing in cases of normal female fetuses, this would have confirmed this hypothesis and provided an absolute defense to the hospital.

    In Australia, probably also in America, it's automatic that the placenta is sent off for hisopathologic examination in cases where there's an abnormality in the pregnancy, labor or fetus. The fetus was thought to be abnormal at birth, so at least some blocks of the placenta should be available for examination later when the defense was being prepared.

    I'm not a geneticist. I don't know if it's possible to test for trisomy 21 or its absence in formolin fixed paraffin embedded tissue, but at least the possibility was there. An alternative would have been, if someone was quick in thinking, was to have taken a sample of the placenta in cytogenetic transport medium for later testing. Something that's only in retrospect easy to think of or do ...

  2. bach:

    In the US, there are 4 criteria which together must be met for malpractice:

    Physician-patient relationship
    Substandard care
    A cause and effect relation between substandard care an injury.

    If any one of the criteria are missing, there is no malpractice.

    A medical mistake is not malpractice unless it causes injury (and falls below a minimal standard of care).

    The mistake of ante-natal diagnosis did not cause the Down's syndrome. So what's the "injury"?

    The injury is that the parents were not given the correct information on which they would have based a decision to abort the child.

    In other words, the child's LIFE is the injury.

    That's the problem. Life is never, never an injury.

    1. Michael,

      All four criteria were met in this case. The injury was the failure to diagnose the trisomy 21, not the trisomy 21. By your logic, if a doctor diagnoses a patient's acute appendicitis as gastro', and it then ruptures causing peritonitis, he's not liable because he didn't cause the acute appendicitis and therefore didn't cause an injury.

      As an aside, the only time I was sued as a pathologist (touch wood and hope that any mistakes I made don't turn up now after I've been retired for 2 years) was for an elective abortion I'd examined about 20 years ago. The registrar (the Australian equivalent of a resident) did a timid D & C yielding scanty products of conception, basically a chorionic villus sampling using an unconventional procedure. The assumption was that not all the products were submitted.

      About 7 months later ...

      The case was still dragging on when I retired, which amazed me. There was an injury, a small one, the child was normal and would fall in the normal lottery of life (he could turn out to be another Einstein or Hitler, or even worse, he could have turned out to be a new Michael Egnor; that's a joke by the way, no offense intended), so the damages paid (shared by the insurance companies covering all concerned) would have been modest, and everyone could have got on with their lives, including the mother who wouldn't be obliged to nurture her sense of grievance to maintain her case for financial damages, and her son who wouldn't have been told for 17 years that he was 'unwanted'.

      It certainly changed my practice. Since then, with products from terminations, I look at them very carefully, recording volume and presence of fetal tissue. My unsued colleagues content themselves with 'bloody curettings' and a single block.

      When there's scanty curettings and no fetal tissue I suggested an incomplete abortion (as a pathologist it wasn't my role to argue whether abortion was moral or not) and advise a quantitative pregnancy test in a week or so to confirm that the termination was complete or not.

    2. Failure to diagnose isn't injury. Injury is harm suffered, and not all failure to diagnose causes harm.

      The success of the litigation is based on the finding that the child's survival is the harm. That's abhorrent.

    3. Michael,

      In this case failure to diagnose is harm in the same way that failure to diagnose acute appendicitis early is harm. Both lead to sequelae. With failure to diagnose trisomy 21, it's the parents chance of having a legal termination if the test showed a significant non-remedial condition as trisomy 21 is. With acute appendicitis, it's rupture and adhesions following peritonitis.

      The parents had screening because they didn't want a child with trisomy 21. They didn't have it for a whim. While abortion is legal, they have the right, which you nor anyone else has the right to take away, to have screening procedures such as amniocentesis, which isn't a trivial procedure.

      The harm was the failure to diagnose, not the child's survival. If the child had some other medical condition causing death a short time after birth, there still would have been harm.

      Actually, I wonder if all the facts in this case haven't been reported. Amniocentesis has been performed for decades. There must be thousands, if not tens of thousands of amniocentesis procedures for chorionic villus sampling and cytogenetics.

      I would think that the cytogenetic labs would be concerned with quality assurance; ensuring that the antenatal diagnosis matches the result. If maternal cells instead of fetal cells are examined in rare cases, then there should be rare cases previously of male babies being delivered when the antenatal diagnosis indicated normal female. If that didn't raise a red flag, then it would indicate lax control of the procedure.

    4. A beautiful little blog post.
      Regardless of all the legalese bullshit, I cannot imagine a parent claiming the life of their child is some sort of injury to them.
      No one could pay me enough to even THINK that about my kids.
      The whole bloody circus disgusts me.

  3. This post reminded me of my third pregnancy when I was 38. When I had my pre-natal scan, the radiologist saw an abnormality in the heart of my baby. He sent me for amniocentesis. The result came back to say that my baby had Trisomy 18, Edwards Syndrome.

    I asked the doctor the average life span of someone with that condition and as far as I remember, he said, 2 to 12 years. Then without me asking about it, he said I can have it aborted. I replied " I let nature take its course".

    Unfortunately, my baby died 2 hours after birth, just enough time for us to coddle him.

    1. Melbourne-Theist,

      Well, you were given an accurate diagnosis and the opportunity of having an elective abortion if you wanted one.

      The Oregon couple were denied that.

      What does Michael (or anyone who disapproves of the court decision) dislike more;

      A price being placed on the inconvenience and added expense of caring for a trisomy 21 child,

      Or, screening procedures, such as amniocentesis and chorionic villus sampling for cytogenetics, followed by election abortions if an abnormality is detected?

      I suspect, if Michael thinks about it, he would object to the 2nd more than the 1st, so he should be hoping for more of these errors and more court cases awarding large damages, so that the procedure comes to be regarded as unreliable and high risk, insurance companies stop covering the procedure by adding an exclusion to their policies or increase the premiums for doctors wanting to offer the service that it no longer is done.

    2. Melbourne-Theist,

      I knew that the outlook for trisomy 18 is dismal, but I've just looked up the figures, and actually you were extremely fortunate to get to full term. Most spontaneously abort. Of the few who survive to birth, most die by 2 weeks. Only about 1% born survive to 10 years, so actually doing nothing was reasonable.

    3. Melbourne Theist,
      God bless you both and your little babe too.
      A very touching look into what motherhood, life and love is all about.
      You are a brave woman, and must be an excellent Mum.
      Your husband is a very lucky man, indeed.
      Thank you for sharing.
      I'll give my little guy an extra snuggle (1000 +1) today after reading your comment.