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Growth Minimization in Severely Disabled Children

2016-03-22

Here’s a controversial issue: if your two-year-old is so severely disabled that she will never walk, talk, read, or eat on her own, what should you do to keep her at home as long as possible?  One radical treatment, detailed in a New York Times article, involves administering estrogen (regardless of the person’s gender) starting at the age of two or three until about age six to induce the epiphyses (growing ends) of the bones to close up prematurely, limiting their eventual “stature” (or length, since they will never stand.)  Combined with calorie limitation to prevent obesity, ideally this treatment can result in an “adult” who is a foot shorter and half as heavy as normal.

In females, this therapy is usually combined with bilateral subcutaneous mastectomy (removal of the breast buds) and hysterectomy to prevent maturation of the sexual organs.  In males, this surgery is unnecessary, but mastectomy may be performed for cosmetic reasons.  The resulting medical dwarfism makes the patient much easier to handle for the parents, who are generally the full-time caregivers.  Compared with picking up a patient who weighs over a hundred pounds, a fifty pound end weight makes it relatively simple to transfer the patient from bed to wheelchair and into and out of the bathtub.  The contrast in size and portability is remarkable and saves tremendous effort in care-giving.

Besides the advantage in transportability, there is a sense that the child is more “cuddle-able.”  The child seems more an object of affection or even a pet.

The most serious error that could result from this treatment would be the restriction of growth of someone who would eventually be ambulatory and able to care for themselves.  This is relatively simple to avoid because the only patients considered for this treatment are profoundly, permanently disabled, usually with grossly shrunken brains and undeveloped visual and speech centers.

In the 1960’s, estrogen treatment was considered for a few normal girls who were predicted to grow to be “too tall.”  This idea was abandoned after a few girls were treated, partially because the idea of being “too tall” fell out of favor.  In the present time, girls who undergo precocious puberty are also not treated, partly because many of them are intellectually disabled and the early maturation limits their adult stature.  Another group of those who undergo precocious puberty do so because they are relatively obese, and there seems to be a threshold weight of about a hundred pounds at which a girl will undergo puberty, regardless of age.

Another objection is the theoretical lack of medical justification for inducing premature epiphyseal closure.  Many people, none of whom have had to care for a profoundly disabled, full-sized adult, object to the treatment on the grounds that it is “medically unnecessary” and violates the patient’s rights.  In fact, the degree of moral objection to this treatment is dramatic and there are individuals who describe it with disgust as deeply inhumane.

The alternative, in many cases, is placing the person in an institution when he becomes too large to lift.  Institutions are, first, unavailable, and second, grossly abusive warehouses when they can be found.  Many parents would find institutionalizing their child unacceptable, and find themselves trapped with an adult-sized but totally dependent vegetable in their homes.  They are forced to use lifting devices to remove the person from bed for placement in a wheelchair, or, even more difficult, to place the person in a bathtub or remove him after washing.

The response to moral objections is simply that the patient has no awareness of his or her individual size or physical configuration because he or she is so profoundly disabled.  The advantages of smaller size are so great to the caregiver that they justify any theoretical impairment of the patient’s personal “space.”  In fact, the idea that “bigger is better” and that increasing size represents maturation and eventual graduation to adult status is really backward thinking.  In the business world, being taller is an advantage, but to a minimally self-aware, profoundly disabled person, size is likely to be a drawback.

A commenter responded to the article by describing her/his personal situation.   He/she is an adult with severe autism who functions at an adult level in some situations but is unable to hold down a job because of regressive behavior in some circumstances.  He/she states that it would be much preferable for social reasons if he/she were not five foot eleven inches tall and 170 pounds.  If he/she were childlike in stature, he/she states that others would treat him/her like a child and not expect completely adult behavior.   In other words, a childlike appearance would elicit childlike treatment from others.  As it is, he/she states that the only people who he/she can relate to and be friendly with are other children and older adults, who are more tolerant.

For this reason, both self-image and management by others, it would be preferable for growth of severely disabled children to be greatly limited.  There is no advantage for a profoundly disabled, nonambulatory person to be full-sized because the person is unable to stand up in the first place.  Provided that patients are carefully evaluated for potential maturation and reversal of the profound disabilities noted in early childhood, there are many advantages to be had by limiting growth to a manageable size.

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