Happiness... and really hard decisions

The Feast of the Rejoicing of the Law at the Synagogue
in Livorno, Italy by Solomon Hart, 1850 (Jewish Museum) [Image Source]

As we stand on the cusp of the happiest holiday in the Jewish calendar, I thought it appropriate to share the Dvar Torah that I relate annually at our family table.

The joy of every other holiday in the Jewish calendar is tempered, each for its own distinctive reason.

• On the New Year, joy is not even mentioned in the Torah at all because of the angst we all experience over our impending judgments. 
• On Passover, aside from the first day, we don't even recite the Hallel in its entirety (as we do on Sukkot) because the rejoicing over our liberation from slavery is marred by the deaths of the Egyptians and G-d has warned us not to rejoice over the fall of our enemies. 
• On Shavuot, the Torah only mentions joy once because we are so concerned over the upcoming harvest which would traditionally determine our upcoming economic situation.

But on Sukkot, which follows just a few days after Yom Kippur, when we believe we have been forgiven and adjudged mercifully, we are urged three times to rejoice. Nevertheless, even on this happiest of all holidays, the word "אך" precedes one of the mentions of joy (in Hebrew: שמח).

The word "אך" is an adverb that limits or minimizes. So, the question is: why, even on this happiest holiday, isn't our joy limitless?

The answer given by the Yalkut Shimoni is that, as parents, we are incessantly wracked with worry over our children's welfare. It's just an inescapable aspect of life. Only in the world to come, when we believe that man will be immortal, will this consuming concern vanish.

To this observation I say: "so true".

But I would add that a parent who has buried a child fears for the welfare of his other children even more intensely than others.

Now parents have myriad ways of expressing that constant concern. One parent's assistance can be another's abuse. A treatment for children with severe disabilities demonstrates this divergence in parental attitudes: the attenuated growth treatment (AGT) commonly known as the Ashley Treatment after its most famous recipient.

I wrote about this twice a few years ago when it was a headliner. In the first post, I was supportive. In the second, downright condemnatory. Which, of course, proves not only how decision-challenged I can be but also what complex issues AGT involves.

Ashley [Image Source]

This week I stumbled across a NY Times article on the Ashley Treatment that appeared back in March 2016.

Both sides of the divide - parents who have administered the treatment and those who abhor it - share many core traits. They are all loving, devoted and self-sacrificing toward their children with severe disabilities. They are also committed to caring for their children at home, despite the challenges posed by their profound disabilities.

The distinction between the two camps is a fine but significant one: which measures are acceptable to enable you to keep your child at home? Are there actions which are beyond a red line?

If you're unfamiliar with the Ashley treatment - and disability activists argue that it isn't one at all because no illness is being treated - here is what doctors did to that girl, whose last name has never been released by her family. They administered the estrogen estradiol which effectively reduced her future predicted height by approximately 13 inches. Additionally, she underwent a hysterectomy to preclude the discomfort of painful menses as well as the uterine bleeding that high doses of estrogen can cause, and the removal of her breast nodules to prevent the growth of breasts.

For the treatment to be most effective a careful monitoring of calories was also required. The desired end result is, of course, a shorter, lighter child.

These same measures have been taken by many other parents who congregate at the website and private message board Pillowangel.org, maintained by Ashley’s parents who have never made their names public, identifying themselves only as “Ashley’s Mom” and “Ashley’s Dad,” or AM and AD. (Their site’s name comes from the endearment given to Ashley and other children like her who spend most of their hours propped up by pillows in bed.)

But then last summer, the Pediatric Endocrine Society published a survey of its members in the Archives of Diseases in Childhood indicating that at least 65 children have received the therapy. (The survey did not break down participants by sex or note whether they had hysterectomies or breast-bud removal.)

And by many doctors’ accounts, the demand for it is increasing even as doctors prefer not to talk about the practice publicly. “You might wonder if we’re getting underreporting,” says David Allen, a co-author of the survey and head of the endocrinology and diabetes department at University of Wisconsin American Family Children’s Hospital. “The survey response rate was only 30 percent. We have no good numbers at this point.”

For parents seeking to restrict the growth of a child, the prospect of being able to provide care at home for many years is a strong motivating factor. Yet despite the fact that three out of four people with intellectual and developmental disabilities live with a family member, the assumption that smaller people actually get better care at home — or in any setting, for that matter — is not supported by empirical evidence; no studies have correlated body size with quality of life. There are only the arguments of parents in opposing camps.

The pediatric bioethicist Nikki Kerruish, a senior lecturer at the University of Otago in New Zealand, has analyzed the perspectives of parents who support the therapy and those who oppose it. In the journal Cambridge Quarterly of Healthcare Ethics, she explains that the very definition of “quality of life” is disputed between the groups. Parents who object to curbing growth prioritize their child’s pleasure and comfort but never at the cost of higher-order concerns like bodily integrity and self-determination. They equate “growing” with “thriving.”

No amount of cognitive impairment justifies nonessential medical treatment; growth attenuation is always inappropriate. Conversely, parents who back growth attenuation tend to believe that maximizing pleasurable experiences and minimizing unpleasant ones is the best way to serve a child with extreme disabilities. If this can be achieved by caring for that child as if he or she were a young infant, then that is entirely appropriate.

One common response to critics of the AGT is "don't talk until you've walked in my shoes". Since my daughter Chaya is precisely the type of child for whom this "treatment" is designed, I feel entitled to sound off. That's just one of the (very few) perks of extreme parenting. Another one is that whenever we have had to bring Chaya to Bituach Leumi for a medical re-assessment of her disabilities, I don't sweat. I'm always 100% confident that she will be awarded 100% entitlement.

The number of US doctors who have been approached by parents to administer the treatment is on the rise. A recent survey of the Pediatric Endocrine Society, most of whose members are in the U.S., showed that 32 of 284 respondents have prescribed growth-stunting hormones to at least one disabled child. But my dogged online search didn't turn up even one instance of its use in Israel. If I just didn't persevere enough and you know of such a case please let me know.

I will be very glad to hear your views about this approach to raising a child with severe disabilities.