The Disturbing Case Of “Pillow Angel”.

I’m not sure why the story of Ashley bothers me. All I know is that it does.

Ashley is a nine year old girl – called “Pillow Angel” by her parents – who has static encephalopathy. She has the mental ability of a three month old baby. Her condition is not expected to improve and after consultation with doctors her parents decided to have her uterus and breast buds surgically removed and estrogen administered to seriously restrain her growth.

The reasons given for these procedures are outlined in the linked BBC report and at first all seem logical; the doctors felt they were ethically justified and would allow Ashley a better quality of life.

So why am I disturbed by this story?

Basically, because there appears to be an anomaly. The parents, who I am convinced felt they were making the right decision, said:

“…….the central purpose of the treatment is to improve Ashley’s quality of life.”

Later, they say:

“………the girl lacks the cognitive capacity to experience any sense of indignity.”

To me, those two statements are contradictory. If Ashley has little or no cognitive capacity, then she can hardly recognize any change in her quality of life. Hence, the medical procedures could be of no benefit to the child, but would drastically aid the parents in looking after her.

As an animal welfare worker for many years, I was keen to persuade dog and cat owners of the advantages of neutering their pets. I was fully aware of the stray animal problems besetting the UK and anything done to reduce the numbers had to be worthwhile. But I was under no illusion that the benefits were of anything but a social nature – advantageous to the owners and society in general, rather than to the animals themselves. Dogs and cats, whatever their owners may feel, have limited cognitive capacities and accept mating and the birthing of litters as a matter of instinct. Of course, pet neutering does have the advantage to the animal of removing its instinctive need to roam in search of a mate, but that is hardly relevant in this instance.

I have nothing but sympathy for the parents of “Pillow Angel”, but I believe the doctors were wrong when they agreed to carry out the procedures. Parents are not always the best people to make decisions in this type of situation, and by deferring to their wishes the doctors failed to uphold medical ethics.

The parents of Ashley are attempting to keep her in a child’s body all her life, and I have to reluctantly agree with Agnes Fletcher of the UK’s Disability Rights Commission who, when asked for her opinion, called it a case of “…….unnecessary medical treatment to deal with what is essentially a social problem”

We have no compunction about spaying our dogs and cats at an early age, but when doctors take such drastic decisions with human beings – even those as handicapped as Ashley – to alter natural processes and prevent maturity, I think it is time to express concern.

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9 Replies to “The Disturbing Case Of “Pillow Angel”.”

  1. That is strange, isn’t it. I do feel so terribly bad for the parents. I work with a number of families who have these terrible life decisions to make and it’s never right. Everything was wrong and turned upside down from the beginning. It’s heartbreaking; however, it does give me insight into the actions of people under very difficult positions. Some are incredibly brave and some are wildly and frantically trying to make something that will never be okay, okay.

  2. Flimsy – I think the fact that the parents blogged on the issues didn’t help keep it private.

    PM – “…….trying to make something that will never be okay, okay.” Something we’ve probably all been guilty of at some time in our lives. Me? More than once!

  3. Happy New Year!

    Funny, I was just thinking about this story. I can’t even begin to empathize with the parents. What I find disturbing is how the advance of technology far outstrips our ability to keep up ethically. Considering that this advancement is *accelerating*, I foresee only two outcomes right now: chaos or singularity.

    Maybe they’re the same.

  4. I know what bugs me so much about this one. It’s the nipple buds being removed.

    The hysterectomy i’ve heard mooted about before for severely limited children (and even that sets my teeth on edge, even though i’ve listened to the reasoning), but when surgeons begin to remove secondary sexual characteristics, and further, to control normal growth with abnormal hormone doses, they’ve taken a step into patriarchal decisions about what adult women should be like, (in their arrogant opinion), and enforcing that vision with a technology available to only a handful of specialists.

    That this hideous oppression is being enacted upon an innocent being, pre-pubescent and utterly dependent on others, could inflame anyone’s sense of justice. But i don’t blame the parents for their role in this, because their stance may be one of layman ignorance vs. the goliath of doctordom.

    Who are the scientists to decide the development of this woman’s emotions (and don’t tell me that’s not part and parcel of hormones!), and her only temporal right, the growth of her body? It could be that this girl’s soul is an amazing experiment on the part of the universe, and humankind, to adapt to extraordinary circumstances. I mean, who knows? Who of us knows enough to tamper so completely with the existence of another?

    What i do know, Mr. Adams, is that the pondering of men will never equal the existence of women. And you can take that to the sperm bank, to deposit beside the triple Y boys docs cultivated from our stolen eggs.

  5. Mike – I’m not sure about the similarity of chaos and singularity, but then neither is anyone else on the planet, so I’m not alone there! I don’t believe our ethics should need to keep pace with modern technology. Technology must always remain within the confines of our ethical frameworks. At times, that framework may require adjustment, but surely never simply to accomodate technology.

    Sister Anan – two statements in particular of yours rang true with me:(1) your opening remark – for it was the removal of the nipple buds that, for me, tipped the balance between “possibly acceptable” and “totally unacceptable”; and,(2) your question, “Who of us knows enough to tamper so completely with the existence of another?”. The answer, of course, is – not anyone. It’s hard to pass judgment on an exquisitely emotional and difficult situation, and my compassion for the parents of this child is based entirely on their difficult circumstances. Who can say how one would react given the responsibility of caring for such a child?

    My only slight disagreement concerns your reflections on our male dominated world. While accepting the argument, there are some males sufficiently evolved to recognize and welcome their more sensitive and intuitive feminine side. Sadly, in America at least, the trend is still to suppress and alienate the Goddess.

  6. (grin) point taken, Mr. Adams. I have had the benefit of many such males, mentors and mates and sons, appreciated all. It’s just the few bad eggs that seem to have cornered the market on stink. It’s for those i haul my kickin’ boots on, not any Tom, Dick and Harry with a ‘Y’ profile.

    And. You do know that we believe the earth to be a living being, don’t you? One that will call humankind to account at the end of time for all the abuses of her resources. Even down to the least drop of water. You might be cheered to know that we believe the punishment for these abuses to be quite, quite severe.

  7. Sister Anan – I am cheered that you accept the earth as a living organism, for it is undoubtedly so. My own view is that she will call humankind to account for her mistreatment by denying our species the benefits that have allowed us to survive and flourish here. That, I believe, will happen – is already happening – long before the end of time. As for punishment, well, we are all responsible to a greater or lesser degree. Perhaps learning the lessons is more important than punishment.

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