Wrongful Life?

A woman had a 20 week pregnancy scan. The scan was read incorrectly, she was told her baby had no abnormalities. Her baby was born with spina bifida. The people who performed the scan admit they had made an error. The mother can’t meet the costs of physiotherapy that are crucial to her child’s well-being. She tries to make a claim under ACC: New Zealand’s accident compensation scheme, which is known to be quite generous in its coverage of costs when an individual meets the criteria. In order to successfully claim for this coverage, the mother must prove that the failure to provide treatment – in this case, the failure to have the abortion that she would have had if she had correct knowledge from the scan – has led to a personal injury.

By Scott*, via Flickr

Let’s be very clear about this: In order for her to successfully claim, she needs to state that she would have aborted her child had she known it was disabled, and that the resulting child’s condition is a “personal injury” to her as the mother.

And that is what she is claiming.

She states too that she loves her child, she wants the very best for her child, and it hurts her to make these sorts of claims about her child. Remember too that this is the only way she can see to be able to afford much-needed treatment for her child: By successfully making a claim under ACC. You need to be aware too that ACC makes what is considered by many to be an arbitrary decision between providing cover for disability caused by accident, and not covering disability present at birth. These are the hardships and injustices this mother is up against. I want you to keep all that in mind, because what follows is going to get ugly, and will upset some people.

In this post I am going to delve more deeply into the legal issues at play here and why the mother is forced into this line of argument. I will not get highly technical; I want this to be accessible because I want to help people understand this story. I am no expert in this area either, I am relying on a general legal background to help me through the mire.

The case originated as an appeal against ACC’s ruling not to cover the mother. Both the District Court and High Court dismissed her appeals, but the mother has won the right to have the Court of Appeal hear her case. The child is now five years old.

First, the word “treatment” is important here, because the mother needs to argue that she was injured by the failure to provide treatment that should have been made available to her, through the error of the scan readers. It appears that in New Zealand and in most of the world, the option to “treat” spina bifida is not to perform surgery: “…intra-uterine procedures to treat spina bifida before birth remain experimental and are only practiced in one or two centres in the United States of America.” (Quote from High Court decision.) Rather, if one wishes to “treat” the condition, the treatment available is abortion.

Therefore, her strongest argument would depend on her consistently claiming she would have chosen to have that treatment – the abortion – had the option being made available to her.

Next we have the question of “personal injury.” How has the mother suffered some personal injury here, surely such a claim would have to be made on behalf only of the child (if at all)? First, to look to the mother’s claim.

The pregnancy itself has not caused injury to the mother, and yet that is the outcome of the failure of treatment: the continuing pregnancy. How can the mother call the child’s condition after birth, which harms the child directly and not the mother directly, a personal injury? She can do this by having the lawyer make a claim along these lines: “The continued development of the child’s condition is, in itself, harmful and injurious to the appellant mother.” (Quote from High Court decision.) In the High Court it was decided that the child, being a separate person upon birth, is the one – if anyone is the one – with a claim here, where the mother suffered no additional, separate physical injuries.

What of the child’s potential claim then; why would the mother persist with a claim in her own right? What does such a claim amount to for the child in its own right, when the only alternative result of the ill-read scan, was abortion, was death? The child would be claiming, essentially, that the wrong done to it, was life. That it is “wrongful life.” The High Court judge agreed with a decision by the Court of Appeal of England and Wales on this general issue, where that court stated: “to entertain the child’s claim would be to contrary to public policy as a violation of the sanctity of human life.” Which is to say, essentially, that a claim made under the child’s name, would be ethically and legally abhorrent.

Do you see then, why the mother finds herself making these horrible claims? Can you see past the horror of what she is forced to say in a desperate effort to get her child appropriate care, in the face of a system set up in a way that disadvantages those born with disability compared to those who came to disability after birth? Or are her claims too stomach-churning for you?

I will tell you what I personally think and feel, though I am torn on this and unsettled in my own views.

What I hear is a mother who loves her child, doing whatever she must to get her child the best shot in life. I see this as a story about ACC, and the wording of ACC (“treatment,” “personal injury”). I see her arguing, hoping, that other people will understand the division between choosing an abortion for a child you will thereby never know, versus endlessly and completely loving the child you now have.

I see a public ready to vilify her for her readiness to speak about how she’d have liked to abort the child she now has, and for promoting a view about the abortion of the disabled. And I very much so understand that public, because I have that reaction too; it’s hard not to. Does anything – ACC, poverty, the well-being of a child – excuse saying you wish you’d had the option to abort your child? Do we not have to weigh-up the well-being of the child who may receive the ACC payment, against the mental and emotional well-being of a child hearing the world being told their mother would have aborted them?

But don’t we also have to be honest about the fact that women do have the right of abortion, and have chosen to abort for much less than serious disability? I don’t think we can tackle this whole issue, without staring in the face of the law and policy around abortion and even the issue of eugenics. (I have written a bit about this in the past too, in relation to an earlier New Zealand news story, but around Down syndrome and International Crime.)

So the issues and consequences run deep. If the upcoming court case is successful, it will have wide-ranging implications, but it looks unlikely to succeed. At the very least, it will be another opportunity for our courts to confront these issues, and what an unjust government support system forces parents to argue in their efforts to get their children the care they need.


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16 Responses to Wrongful Life?

  1. Linda says:

    What a heartbreaking story. Good luck mom.

  2. quintorpian says:

    It’s an extreme version of the more common situation whereby parents of disabled children, wanting access to publicly funded interventions for their children, must “sell” their child purely as a tragedy, and not speak of their love and any positive observations lest they endanger the possibility for funding. It was my experience, and it felt like a game i had to play. In my case there was no negative attitudes from others. But I guess in tis case, it would get leaked to the media and of course people would have the unacceptable view that she considered her child’s life wrongful. I wish the media could be on the side of the mother, describing the situation she was forced into (didn’t read articles sorry), but they seem to prefer those extreme shocking stories.
    It’s good to read the line of reasoning she and her lawyer had to follow. Makes a lot of sense if you understand it.

  3. Angela says:

    Good post- thanks.Such a difficult one.Made even more distressing by the fact that after 20 weeks that mother would be having a late term abortion and delivering a baby which would then die, not a D & C type procedure. Would she really have chosen that? Knew a lovely mum once who had an extremely disabled son, she told me that if she had known how hard his life would be for him and how his care would have impacted so much on caring for her other children she would have had a termination. All we want is the best for our children and let’s face it some of that “best” costs money-I feel so much for this mother. Letter in the NZ Herald this morning saying she should be “named” (and shamed)-people don’t have a clue. Walk a mile in her (or any parent of a disabled child’s) shoes.

    • I didn’t see that original letter when it came out, but I did happen upon the print version of the Herald the day (or two) afterwards, and had the chance to read some more thoughtful reponses in support of the mother, thankfully.

  4. Mum says:

    I hope this mother wins being in the same situation as her.
    Through out life as parents, we are told it is our duty to care, protect, prevent harm & suffering to our child. If we know what suffering a child will go through & the pain that will be a big part of that childs life & then allow it to happen, would that not be classed as Child Abuse?….I believe so.

    Had I known of my son’s disability during my pregnancy I too would of aborted.
    To see the constant pain & suffering & endless surgeries my son has to endure for all his life is absolutely heart breaking, I die inside every time I see him cry & howl with pain. The older he gets the loader the cry. Why would any parent WANT this for their child? I know I love my child more to never want him to go through this had I known pre birth.

    I hope to God that the public & critics will be sensitive to this mothers ACC claim & give her the support she needs.

    Getting support through the public health system is worst than pulling teeth.

  5. nostromo says:

    I hope she gets some assistance, but not through ACC, it is not the right avenue. If we can term what happened to her an injury we can classify pretty much any misfortune that causes us a problem as an injury.

    • Mum says:

      What other avenue is there?
      This mother is covered by ACC as per ACC legislation. When Horizon Scanning failed to follow basic written Guidelines which led to the ultrasound reports not being read correctly or the scan being viewed correctly by the radiologist this allows ACC coverage for the mother as failure to follow these Guidelines is covered under ACC as Treatment Injury.
      ACC can always increase their levies with Horizon or at the very least, Horizon should pay up to this mother.

      I too would like there to be another avenue for this mother but unfortunately there isn’t & I don’t think suggesting Winz would be a suitable option either.

      • nostromo says:

        The mother would be covered if the scan (i.e. treatment) was of her – but it wasn’t.

        Perhaps the proper avenue would be to sue Horizon or seek damages in some way, seeing as ACC cover (i.e. injury) looks like it won’t apply. Don’t know how practical that is, but thats a different issue.

      • Nostromo, just on the point of suing the scanners, my understanding is that if the event would otherwise be covered by ACC, then you can’t sue privately,since one of the main reasons for having ACC was to get rid of the private suits you hear about in America all the time. So if the scanning error is covered by ACC – and it looks like it is, it just doesn’t include injury to her daughter and those associated costs since that wasn’t a “personal injury” under the Act – then she isn’t left room to sue the scanners in addition to those rights. It’s been many years since I studied ACC, so I’m not 100% sure on this at all, but as I understand it it’s really not simply a matter of suing the scanners as an alternative in this situation. It would depend on the state of torts law in the area too I expect; as to how “immediate” the resulting damage to her daughter is, to their failure of service, and I expect the issue of “wrongful life” would be relevant there too (?) Maybe someone else more up with the recent state of the law could meaningfully comment.

  6. Sunshine says:

    (Shrug) Yeah. This is hard. It reminds me of the motivational speakers that used to come to the high schools when I was a teenager, to talk about the tragedy of teen pregnancy. Naturally, the motivational speakers were teen moms. And I guess they were more “de”motivational speakers. It ALWAYS bothered me, even when I was a young and self absorbed kid. I naturally connected their warning to avoid their same path with their personal regret they must have felt towards their own child.

    It still bothers me. I won’t say that it doesn’t. I don’t know how one can fully separate from “What could have been” with “What would not have been.” But as a parent it is easier for me to understand how important financial considerations really are when it comes to family planning. Making informed decisions about your own reproductive system based on your own resources and capabilities is an important right whether or not you love a child who was born as a result of being denied that right. And even if the denial of the right to informed consent because of this mistake is debatable… I understand a mother doing what she has to do when she is desperate for resources. I do not think I would make the same choices this mother has, and I think I feel differently about my personal feelings towards abortion, and quality of life, but I really feel surprisingly un-conflicted about the legal implications. This error will cost her financially for a lifetime.

    • I’ve found myself thinking about this case quite a bit, and I think I’d feel more comfortable with the whole situation if she stood a good chance of winning the case; that way her statement that she would have aborted her child pays off for the well-being of her child. As is, she’s just saying over and over that she’d have aborted the child, but no good is coming of it thanks to the wording and interpretation of the Act. But what options does she otherwise have? And if she’s successful, it would help a lot of other desperate families too, and would challenge a messed-up system, and surely that – as well as bringing this issue to public light, re inadequate existing supports for disabled children – is worth going through these cases..? I’m still uncertain, but I do know I have great sympathy for this mother and for what she’s trying to achieve for her daughter’s future, in terms of getting her the best help she can.

  7. SB_Australia says:

    Meh…she has to do what needs to be some to ensure appropriate care for her child. I don’t see the problem here. Sure, it’s going to make her feel like shit to say those things but if it gets her a nice pay out that allows her to provide care for her child then it’s worth it…an ends justifying the means story.

  8. valueall says:

    I too get sick of the tragedy/burden/deficit model and how the media takes advantage of it to present a sensational story (and I spent a lot of time trying to explain this to TVNZ
    Sunday with their dreadful stories on Intellectual Disability recently) & also having to comply with the “glass half empty/’needs’ assessment” saga but if she really felt the need to have to say she would have aborted the baby had she know in order to get funding that really does illustrate perfectly the old saying that “money is the root of all evil”. This must be harmful to the child.

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