Stunting Children “For Their Own Good”

There’s a story in the news about “growth attenuation treatment” or an intentional hormonal and surgical stunting of a disabled child’s body. It’s difficult even reading the press articles about this, because of the ableism in the writing. Charley Hooper is described in dehumanizing terms. “To hold Charley is to experience the sensation of dead weight. She is a jumble of uncontrolled limbs with a floppy head that needs supporting,” according to the Associated Press. This is a living human child being discussed like nothing more than unweildy luggage, in the source for mainstream journalism.

Charley has several impairments. She was deprived of oxygen at birth resulting in a brain injury. She has cerebral palsy, is blind, and is epileptic. Each of these disabilities requires different accommodations. Not one of them was treated or cured by stunting her physical growth. Not one of them was treated or cured by removing her uterus and breast buds. Not one of them was treated or cured by forcing her into puberty and menstruation at six years old. Growth attenuation “treatment” did not actually treat any of Charley’s pre-existing conditions. Rather it gave her new ones. Extreme small stature is a disability, requiring numerous acommodations. This is a new disability Charley was not destined to have which her parents gave to her by their choice, and without hers.

If Charley did not have multiple pre-existing disabilities, no ethics committee would agree to this, and the general public would not find themselves divided on the issue. Putting a six-year-old through unnecessary puberty and then surgically removing her breasts and uterus would be seen as obvoius wrongs. Intentionally stunting a child’s (most often a girl child’s) growth might be likened to foot binding or forced malnutrition. Removing healthy organs to keep children undersized as adults is simply not something we do – unless of course the child is disabled. Then suddenly we try to concoct reasons why it might be a necessary course of action. Despite growth attenuation not being a cure for the disabilities these children have. What then can our reasoning be? If we would never do this to an able child, if we would never subject them to unnecessary major abdominal surgery, and if it does not treat any of the conditions a disabled child presents with, why on earth would we do this to disabled children? Because we don’t think profoundly disabled children are fully human.

The press stories write about the lack of communication between Charley and her parents as if it were Charley’s fault. Not as if her parents who do not have communication disabilites might have a greater responsibility to go the extra mile in trying to converse with their daughter. But the fact is speech is not the only form of communication, and even people who have never spent a day in disability advocacy communities know that. We know that babies cry to communicate with their parents, and we know parents can tell what their babies do and don’t like long before those babies can speak. We know that when a cut purrs, it is happy, and that when it arches its back and hisses it is upset, and a cat isn’t even the same species. We do know ways of figuring out what someone likes and doesn’t like, wants and doesn’t want, without the English language. The articles make no mention of what if any methods of communication the Hoopers tried with Charley. I know before my son could speak, I used flash cards and sign language and songs and any other method I could think of to know his mind.

The Hooper say they had Charley’s womb removed so that she wouldn’t get pregnant in the event she was abused. The odds aren’t great for Charley and girls like her. Girls with intellectual and developmental disabilites are sexually assaulted at a nearly 100% rate. Such girls are at increased risk of virtually all forms of abuse, including financial, caretaker, parental, and physical. Sometimes pregnancy is what alerts others to the abuse, enabling them to make it stop. That’s a hard choice to make as a parent of a girl most likely to be abused, a girl who may also be most likely to have pregnancy complications or who may be unable to parent independently.

Of course, seven is a young age to be making such predictions about future competency. Autistic author and advocate Amy Sequenzia is non-speaking and was presumed to be severely mentally impaired by her parents and doctors until she began typing to communicate at age eight. If contraception is the choice parents make, as many many parents of both disabled and abled teens and preteens do, there are a multitude of less invasive options. Long-term reversible contraceptives such as IUDs can prevent pregnancy. Hormonal birth control can be used to avoid menstruation. Hysterectomy on a pre-preteen child is not a proportional response to puberty and the development of secondary sexual characteristics.

Growth attenuation is extreme, invasive, unnecessary, and does not treat or cure the disabilities of the children put through it. The World Health Organization (WHO) has called for an end to the involuntary sterilization of disabled people, people like Charley. Charley will spend the rest of her life in a body others perceive as childish. Charley will be treated as a child by virtually everyone she meets for the rest of her life, no matter how long that is. Charley will be undersized and less able to defend herself. And if Charley’s parents continue on this path of making her body accommodate them, instead of making their world accommodate Charley and her body, Charley will continue to struggle to make herself understood.

11 thoughts on “Stunting Children “For Their Own Good”

  1. The cost of long term care for someone like this girl can run into the millions of dollars over the course of a lifetime. My guess is that by keeping her small, her parents feel they’ll be able to better take care of her at home and without needing a full time nurse.

    • They are making a decision that best meets the needs of their family and their child. She isn’t a “normal” child. She has severe disabilities that there is no chance of recovery from. In some places she may even be allowed to withhold food and water from her and allow her to pass naturally. At least they are trying to take the best care of her as they can for as long as they can. No one has the right to judge them without walking a mile in their shoes. Unless you have had to care for a child with disabilities as severe as hers you have no idea how difficult the task is. She will be taken care of much better at home than an institution and will be less likely to be abused.

  2. I guess some scientists think they are being clever when they conceive of ideas like this. I like the point you bring up Angie about “Is it for the child’s benefit or for the parents’?”. We of course live in a world where people try to “cure” things that are rather natural parts of life. I guess it’s true that in many ways the world has become more accommodating to people with disadvantages, but perhaps at the same time some people are getting “smarter” and coming up with ways to “solve” problems that have normally been treated as unavoidable. I mean at one end there’s looking for a cure for cancer, but then at the other extreme there’s looking for a cure for something like homosexuality. What NEEDS a cure and what needs help and support?

    • This whanau have our full support…this decision can only benefit Charlie and lowers the risk of any further injury to her because of her disability…Brave parents giving their daughter a quality of life… The only medical neglect here is from health professionals that damaged her so very badly and walked away!!

  3. Hi Angie. I posted 12 hours ago to you but see that you haven’t published it. I’m adding it again in the next comment just in case it never went through. I do hope you’ll publish it – or at very least message me to discuss.

  4. Hi Angie. Thanks for taking such an interest in our family – and I mean that genuinely. The whole reason we agreed to do a story was to get discussion happening and we appreciate differing points of view.

    That said, we need to point out a few inaccuracies. I’ll take it paragraph by paragraph.

    First off, it’s hormonal stunting of growth, not hormonal and surgical. The growth attenuation (GA) treatment can be done without the hysterctomy, and vice versa. They are not necessarily part and parcel. We don’t feel that the wording shows ableism or is dehumanising. The relatively short part of the article you refer to here was meant only as a way to describe to the readers the physical reality of Charley’s body when she is handled and the level of her physical disabilities. This was important to lay out, as the vast majority of the world has never met a child as disabled as Charley and therefore is unable to gain this insight on their own. The rest of the article speaks of Charley beautifully when referring to her as a person as opposed to trying to describe her physical severity.

    Charley is not epileptic. She was, but has not experienced a seizure since day 3 of the patches, and back then she was on a relatively low dose, so actually, the GA did indeed ‘cure’ one of the three “impairments” you listed, even though the GA was never intended to cure any of them. It also reduced her painfully high muscle tone in her limbs, allowing her eyes to stop their constant and extreme rolling (a pain response for Charley) and relax in a more neutral position and virtually eliminated the frequent (dozens of episodes a day) dystonia. We did not remove Charley’s breast buds. We applied to but were turned down, so went ahead with the GA instead thinking that if need be we might consider a breast reduction procedure later, just as I had myself at 18 years of age. However, we then eventually discovered that the high doses of estrogen required for the GA actually inhibit breast growth so we did not need to. This in turn might mean that others undertaking this path will not need to either. Only her uterus and her appendix (in the same operation). We also didn’t “force her into puberty” – she had already started showing the early signs around her 4th birthday. We merely speed it up. Her stature is not what most would consider “extreme small”. She has adult aunts shorter than that and no-one considers them to have a disability, and we disagree that we have inflicted a “new disability” on her in this regard. We do wonder though what “numerous acommodations” you speak of – we can’t think of one, and certainly not anything close in comparison to the accomodations required if she were to remain growing. Charley cannot choose anything. Nothing. That’s the sad reality. So we must decide for her, from the clothes she wears to what and when (and even how) she eats and yes, what medications or surgeries she has.

    You are absolutely correct in the next paragraph. No-one would disagree with you that if Charley didn’t have multiple disabilities ethics and general public alike would ever have considered this treatment. That would just be silly. To want this treatment for anyone without this level of disability would be ludicrous. So ludicrous that we find this statement of yours perplexing to say the least. It’s a bit like saying no-one would ever approve a cancer free person accessing radiation therapy. The GA treatment has been performed mainly on boys. Around two thirds of cases that I know of personally have been boys, nots girls. Forced malnutrition has actually been used with severely disabled children. That is something we did not entertain for a second, and never would. Hopefully it goes without saying that would be cruel. We don’t see using the patches as cruel. We didn’t remove her ‘healthy organs’ to keep her undersized. As stated before, the surgery was seperate to the GA, and likely to occur with or without it. It was clinically indicated, and has made her much more comfortable. I guess I’ve addressed all of your next points in this paragraph already.

    In our view and that of virtually every commenter we have come across, the press story wrote about the lack of communication from Charley because that’s what it is. Unlike your writings, they have not looked to blame us, her parents, for not trying hard enough – for the record, we did, and in fact still do. The article did state “Her parents try to interpret what she feels by the pitch and volume of her moans, and whether her freckled face is slack, smiling or contorted in a gaping yawn when she suffers through intense muscle contractions.” so we very much agree with you that speech is not the only useful form of communication. It’s great that your son eventually learned to speak. Charley, however, is not your son. She is also not Amy Sequenzia. Just because it happened for them, doesn’t mean it will happen for Charley.

    I’m not sure where you read that we “had Charley’s womb removed so that she wouldn’t get pregnant in the event she was abused”. We’d appreciate it genuinely if you could point it out to us. I don’t remember it in the article. We have never said it. We have never thought it. Charley was never going to be able to choose to have a baby. We didn’t take that choice away. The midwives did that. We removed an otherwise useless organ that was likely (based on my family history) to cause her nothing but pain and discomfort. We’re interested to know where you got the “nearly 100%” rate of sexual abuse from. While I don’t doubt it is high, and will admit it is a fear that we hope to avoid by always providing her care ourselves, I have never seen that rate quoted before.

    Charley’s “future competency” was actually predicted at 5 months of age using ECG results that showed damage in every part of her brain. It was backed up further by the fact that her brain never grew (she had a head circumference of 37cms at birth. 10 years on, it’s 38cm). That said, neither the GA nor the hysterectomy has alter Charley’s potential for cognitive improvement. One could argue that the lack of seizures might actually assist that potential. Certainly, the smiles that we finally saw from her at 5 years of age were a vast improvement that we had come to think of as only a pipe dream. Many other types of methods and medications were considered alongside the hysterectomy option. For various reasons – mainly concerning potential long term side effects and overall risk to her health – all were discounted as inferior choices for Charley. Although Charley was “pre-teen”, she was also fully mature since puberty was all but completed by the time she was 7.

    Obviously our overall views on this last paragraph differ. We believe everyone has the right to individualised care, regardless of what form that takes. For us, the GA was not extreme, invasive, or unnecessary. For us it was a miracle. It could well be that people might talk to Charley as a child always. I can’t see into the future on that. Nor though am I concerned – the important thing to me is that Charley will have people talk to Charley in the future. Period. And with her being completely adored and also able to access the world more frequently, we’re very confident of that at least. Regardless of her size or age, Charley is unable to “defend herself”. She has no purposeful movement of any one single muscle in her body. Not even her eyes. Where we can and for her basic physical and emotion needs, we understand Charley just fine, but thanks for your concern.

    I can’t be certain but I’m fairly sure there was another paragraph in this post before that dealt with me personally and my feelings towards Charley, and also indicating that the treatment was more for our benefit than hers? If I’m correct please feel free to add it back in. I don’t really want to answer it without having it in front of me, other than to reassure you that Charley was at the heart of this decision, 100%, and anything we get out of it – like being able to hang with Charley in almost any circumstance imaginable – is a massive bonus. It does beg the question though why you would publish it and then remove it…

    I’m happy to discuss this further if you’d like, and not with a view to change your mind – we absolutely appreciate there will be varying opinion on this subject and we’re happy with that, if they’re based on fact – but to answer any questions or take in any further views. We welcome open discussions. As we said at the start, that’s why we agreed to do the story.

    Jenn – Charley’s Mum

    • Thank you so much for responding. I’m glad you took the time to go point by point.
      I have a child similar to Charley, and the ableism in the post and comments is infuriating.

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