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Hysteria over a hysterectomy

The Family Court in Brisbance this week authorised a hysterectomy for a severely disabled 11 year old girl. Disability groups have branded the decision an abuse of human rights and called for a law prohibiting the sterilisation of disabled children.

The girl in question, Angela, has Rett syndrome with profound intellectual disability and the capacities of a 3-month old baby. Her parents apparently requested the procedure, (supported by three gynecologists) because she has epileptic seizures that are triggered during her heavy menstrual periods.
Full medical details of the case are not available from media reports, but the court was apparently convinced that it would be in Angela's best interests for her to have this procedure.
What reasons might there be for opposing Angela's surgical procedure?
The comments of disability groups appear to place importance on the fact that Angela is a child rather than an adult. Perhaps she should be required to wait until she is 18 before having the procedure? Yet the requirement to wait until an older age would only make sense if Angela were going to be in a position to make a decision for herself at that age. Since her underlying condition is not going to change, decisions at the age of 18 would be made on exactly the same grounds as they are now – whether it is in her best interests to have the procedure. It would be better, in fact, to make the decision earlier, since it would spare her 7 years of additional seizures.
Alternatively, the concern might be the procedure itself, since this will rob Angela of any future possibility of child-bearing. Yet, given the severity of her cognitive impairment, it is hard to believe that Angela would benefit from becoming pregnant, and has anything to gain from remaining fertile.
A third possibility is that the objection is that other, less invasive,  options should be tried first, for example using oral contraceptive agents or other hormones to reduce menstrual bleeding, or adjusting anti-epileptics to minimise the impact on seizure control. However, the court will have to have been convinced that all other options have been explored and excluded as inappropriate.
The main reason that there is such concern about hysterectomy in disabled children is the evidence of past abuses, when individuals (often with only mild or moderate intellectual disability) were sterilised – not for reasons of personal benefit, but for concern about 'genetic fitness' or caregiver convenience. It is important that such decisions are not taken lightly, and probably appropriate that court oversight occurs. However, for those individuals  who can never, and will never benefit from remaining fertile, surgical procedures to remove the uterus, ovaries or testes should be on a par with procedures to remove an appendix, tonsils or fix a hernia. If they are in the best interests of the child, they should not be opposed.

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4 Comment on this post

  1. When Invoking “Abuse of Human Rights” Becomes an Abuse of Human Rights

    It is a popular strategy to invoke abuse of human rights to pursue or usually impose one’s own moral ideal on others at cost of grievous harm to them. This is an unrecognised perverse side effect of the human rights movement.

    This current case is a wonderful example. Angela is a young girl with a developmental age of a 3 month infant who will never develop any further. She suffers from painful periods which cause her life threatening epileptic fits and severe distress. The best treatment for her problems is a hysterectomy yet disability activist groups are attempting to stop her receiving the best treatment for her conditions on the basis of their own versions of discrimination and equality.

    It should be the interests of Angela not those of disability groups which should be put first. She has a basic human right not to suffer.

  2. In whose interests is the hysterectomy being performed? The child’s interest is against having the annoyance, dangers and pain of pregnancy and childbirth. The unborn child (odd that we think a nonexistent thing has interests, but that is what comes from the abortion debate) clearly has an interest in being properly taken care of, but that is often handled by adoption or disposition to an orphanage. What of the parent’s interests?

    I think there is a conflict of interest affecting the parents’ choice as to whether to sterilize — they may fear they may end up taking care of the child’s offspring as well as the child, herself, when she comes of child-bearing age. That would tend to encourage sterilization of the child. I tend to think that such cases are best handled by having the government’s child-welfare agency hire a guardian for the child to determine whether sterilization is in the child’s best interest. There are dangers there, too, of course. They are well known and need not be rehearsed here.

    There are religious objections too, as well as objections by groups that advocate for disabled persons, to any official action (judicial decision, statute, action by a state agency) that allows the hysterectomy. The latter will probably take the decision as an attack on their clients’ condition. The former will object that the hysterectomy somehow violates natural law and holy writ, and encourages others to do the same. That’s politics. My tendency is to accept, then disregard the objection.

  3. I have one major question about this case that i’m struggling to get an answer for. Can any of you medically minded people please help.

    Angela’s doctor says that she will only remove Angela’s Uterus in the hysterectomy but will leave her ovaries and fallopian tubes intact so as not to effect her natural hormones. From what I understand of menstruation induced seizures, they are the result of hormonal change. If there is no intention of disrupting Angela’s hormones how will this hysterectomy stop the seizures?

  4. Dominic Wilkinson

    Good question Jodie, and not one that I have an answer to.
    Seizure related epilepsy has a complicated relationship to hormone levels (see

    You are right that hysterectomy without oophorectomy will have much less effect on hormone levels than if the ovaries are also removed. But I believe that some change in ovarian function and hormone production is often seen after hysterectomy alone (potentially because of changes in ovarian blood supply).

    In terms of the ethical question – one issue is whether this treatment will have the desired effect on seizures. That is a question for an specialist in epilepsy/endocrinology. If it wouldn’t affect seizures, then that would obviously provide an argument against the procedure.

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