The Peter Pan Treatment

by SDG on February 20, 2007

in Current Affairs

A lot of regular JA.O readers may be already aware of this story, as it is all over the blogosphere and has been discussed on Catholic radio. It poses a number of conundrums and ethical snares concerning the proper medical care of disabled people, elective surgery, and other issues.

According to THIS MSNBC ARTICLE, a young girl named Ashley has undergone surgery, hormone treatment and other medical procedures in order to retard her growth – keep her at her present size and weight – so that caring for her will be easier.

In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little “pillow angel” a manageable and more portable size.

The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

Now, I’m not an expert in anything, so I don’t feel the need to do a whole boatload of commentary on this. I think the ethical concerns are obvious enough to anyone. I would like to see some thoughtful combox rumination on this (hopefully with the input of some medical professionals, students and ethicists), while avoiding the immediate consigning of the parents to an especially toasty corner of Hell in a knee-jerk fashion. Keep in mind that there are many parents who struggle with the issues of caring for their disabled children , even as these children become disabled adults. Keep your dog on a leash, is what I’m sayin’, and talk about the issues, rather than making personal attacks.

My first response to this story was to think about how many times my wife and I, as we watched our little ones sleeping or doing something especially endearing, wished out loud (mostly kidding) that we could "put a brick on their head" and keep them that age forever. Just stop time and keep our babies forever. It’s an impulse I’m sure we share with a lot of parents.

But that is not what kids are made for. Certainly MY OWN kids would be easier to care for if we had somehow halted their growth. Alzheimer’s patients would be less worrisome if we surgically made them all paraplegics. They could not wander off and become a danger to themselves and others, that way.

Another thought (and this is complete speculation) that occurred to me was the possibility that the parents, subconsciously, may fear that caring for their child will be more challenging as she grows, not because she will no longer be small and light, but because she will no longer be cute, cuddly and sympathetic. There can be a certain tenderness, sweetness and even playfulness in changing a baby’s diaper. The experience of changing the diaper of a fully-grown adult is rather short on rewards, unless one possesses a particularly mature and compassionate spirituality. I am not saying this is the case with Ashley’s parents, but the thought does occur that perhaps the greatest issues may be emotional and mental, rather than physical.

Just some thoughts.

GET THE STORY.

VISIT THE PARENT’S BLOG.

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The prison inmates arent useless any more. They should each be given a 'miraculas vial', they have the ability to talk to Angels and to ask them to materialize a small speck of healthy medication in the empty vial you give them. The prisoners will look closely inside their vials every morning to determine if they accummulated a tiny bit of chemical drug given to them by the Christian Angels. Give them a list of different types of drugs to request for, let them choose wich one drug type they will get manifested inside their vials. Then when it works you have a new drug to study and mass produce. Develop a small chip thats meant to be the spot where one molecule would be able to appear. First make a nano-box or nano-hole in the center of the chip where the single magic molecule might be found. Once this is done give one chip to each prisoner to put in the vile they each have.

The prison inmates arent useless any more. They should each be given a 'miraculas vial', they have the ability to talk to Angels and to ask them to materialize a small speck of healthy medication in the empty vial you give them. The prisoners will look closely inside their vials every morning to determine if they accummulated a tiny bit of chemical drug given to them by the Christian Angels. Give them a list of different types of drugs to request for, let them choose wich one drug type they will get manifested inside their vials. Then when it works you have a new drug to study and mass produce. Develop a small chip thats meant to be the spot where one molecule would be able to appear. First make a nano-box or nano-hole in the center of the chip where the single magic molecule might be found. Once this is done give one chip to each prisoner to put in the vile they each have.

I've nothing to add from the ethical perspective that has not already been said, but I would like to correct the view I am seeing here about female experience of menstrual cramps and also well-endowed-ness. The truth is that these are a spectrum. For my part, my cramps are so terrible that I was ultimately put onto morphine for them. I hallucinated with the pain. And my, er, bounty came with a host of pains and problems until I had reduction surgery at thirty. I am no wimp about pain - I had root canal and gave birth, both with only minor pain relief. But the cramping was in a whole other category, and it wasn't until after my surgery that I realised that, back and shoulder pain aside, I had been in constant low-grade pain from my altered center of gravity. Female aches and pains are a spectrum, but I don't think even those on the low end are often completely pain-free.

But what this boils down to, exactly, is that our daughter's mind is broken, so we'll give her a body to match.
Bekah, that is it exactly. And that's what makes me weep.

Bekah-- *blink* Outstanding. Honestly, I hadn't thought of it that way, before.
*thinks a bit* That makes things make a lot more sense.... Thank you.

>>Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.~From the parent's website

As per Tim's request, I'm a pediatric nurse at a childrens' hospital. For more than twenty years, I've worked with all sorts of kids with severe disabilities/handicaps: severe cerebral palsy, with and without seizure disorders, severe contractions of limbs, some with obesity, some with feeding tubes, tracheotomy tubes, frequent pneumonias from aspiration of oral secretions, skin breakdowns, and personality to beat the band, no matter the limitations. Some of these kids are obese and some are emaciated. The teen-agers have all the physical changes one expects and, because of their size, are very demanding physically to care for.
Having said all that, I'm very cognizant of where these parents may be coming from. They are not necessarily looking at the "cuteness factor" or the convenience. They may be considering down the road, if she lives twenty more years and they're in 60s or 70s, without the strength and stamina and maybe even good health they currently possess. Spend some time this Lent volunteering at a local long term care facility for these kids and try to understand them a little better. I wonder,too, if an unspoken concern is the surprise pregnancy by some unscrupulous man. It has happened. My initial gut reaction was "I can see doing that" but it didn't take long to realize that it didn't make their actions right.
These parents need our sympathy and prayers, and they need our support in their efforts to secure the help and assistance (physical, financial, emotional) they need to provide the best care these kids deserve. I thank God daily that He didn't put me in their shoes, but He does ask me to reach out my hands in love and care, patience and gentleness, when we meet.
Finally, be assured that there are ongoing discussions about the ethics of this decision by the healthcare professions.

Wesley Smith's actually got a new post today about this subject, linking to a Disability Rights Group that's very concerned about this treatment becoming standard.
http://www.wesleyjsmith.com/blog/2007/02/ashleys-c...

I'll put in a second plug for Wesley J. Smith's blog, particularly on Ashley's case:
link to all files about Ashley's case
This is simply evidence of the overall post-Christian, Western, science-is-God cultural mentality that children should be made, not begotten.
IVF - made, not begotten.
Genetic enhancement - made, not begotten.
So-called "fetal screening" - made, not begotten.
SCNT - made, not begotten.
Unconditional love is becoming a thing of the past. The current approach to children is "I will love you IF...[insert lack of perceived "defect" here]", and that's not good for any of us. Even worse, the children who make it though this moral morass will grow up to be the same children who euthanize their parents when they become difficult to care for.
And the downward spiral continues...

Ry -
I appreciate your trying to get at the meat of the issue, here, by trying to put together a plausible argument for the Ashley Treatment, but I don't think it holds.
For one thing, there must be any number of ways to make a disabled person more comfortable without resorting to radical, non-therapeutic surgery. If the issues were taken one at a time, I doubt any of the surgeries could be supported in reality. I mean, let's go with the obvious, low-tech solutions before we go cutting on the girl! Cut off a limb to save a life? Sure. But to save some trouble?...
None of the procedures done to Ashley treat any disease or defect. These are all healthy organs being removed. I think it is strange to hold that, because Ashley will never be completely normal, it is therefore permiited to make her even less normal in order that she be easier to care for.
In other words, isn't the job of the parents and doctors to help disabled kids to lead as normal and natural a life as possible? The extent of our children's growth, their breast size, their fertility, the severity of their periods, are not ours to control. They never have been.
If I think my son would be happier as an NBA star, is it okay to give him hormone treatments so he can be seven-foot-five? Standard ethics have always said "no", but I'll be darned if I can come up with an argument against it if vague perceptions about "quality of life" become the central consideration of medical ethics. Soon such things will be "a decision that should be left to the individual and the family, with their physician".
People have been all up-in-arms about the use of performance enhancing drugs in professional sports, but with the new ethics on the horizon, what, really, is the problem? Better football through chemistry. Honestly, I can't think of any ethical problem with them if the Ashley logic holds sway.
Cloning, genetically engineered children, the whole thing springs from this heady idea that we can be the masters of our fate... that we can do an end-run around nature, that we can Make Man in Our Image.

The more familiar one is with the details of the situation, the more one tends to sympathize with the parents _in this particular case_. Which is not to say that there isn't a slippery slope, nor that there isn't a powerful need for watchfulness. And I say that I sympathize with these parents as someone whose natural tendency is very much not to do so.
I honestly believe that these individuals have the best interests of their child at heart. But we live in a world where some parents do not, and where the medical community too often enables that latter set to do grave harm. This course of treatment provides a uniquely powerful tool for those less inclined to do good, and hence should be watched closely...every use should be the subject of intense scrutiny.
It is a dangerous tool. Not all uses of dangerous tools are bad, but no matter how good the particular case may be, we must always be mindful of the danger.

If you would not give a child of that age a breast implant then why would you give them breast augmentation? It just doesn't jive. Having taken care of someone who is older and who is disabled I know the chore of what it means to take care of an older adult whose behavior may not be cute. But you just do it. You pray for the grace of God, but you do it. This sets a really ugly prescident for all the kids that are wards of the state in group homes. What an abdication of faith and parental obligation.

So... does ANYONE here think that it's actually to the girl's best intrest?
Sailorette, While I cannot endorse the parents' decision, I would argue that a PLAUSIBLE defense based on the principle of double effect could be made here:
** the act itself must be good or morally neutral: The removal of limbs, organs and tissues is not an evil act if said limbs, organs or tissues are diseased. It is PLAUSIBLE that an argument could be made that the removal of healthy limbs, organs or tissues is morally permissable in certain cases. (For example, a man has a healthy arm caught in a trap and must free himself to live. The trap is foolproof, and the only way to escape is to seperate himself from his arm.)
** the good effect must be a result of the act and not of the evil effect: One might say that the evil effect is Ashley's sterilization. An argument could be made that the parents are not seeking her sterilization but rather her ease of mobility.
** the evil effect must not be directly willed, but may be foreseen and tolerated: The parents do not appear to be desiring any of the evil effects on their daughter. They seem to want only to tolerate them for the sake of Ashley's comfort.
** the good effect outweighs the evil effect, or the two are at least comparable: Ashley loses her reproductive capabilities; however, it is unimaginable that she would have ever used those capabilities had she been left intact. It is PLAUSIBLE that she will be more comfortable to stay at her current size, and that this comfort would outweighs the loss of her potential but highly unlikely fecundity.
Take this as a devil's advocate argument. I am NOT endorsing the procedure decided on by Ashley's parents. I do think, however, that a case could be made.

It seems to me that the parents took this action to make it easier for them to care for her as she got older. That makes me sad because they are overlooking the many good and caring organization who specialize it caring for disabled adults. I spent more than 10 years of my life caring for developmentaly disabled adults and children. There are better options out there than stunting a child's growth.

It does that to me when I post more than twice in an hour, best as I can figure.

*aside* Is anyone else getting "error" messages when you post? I have to PROVE that I am not a spammer or a computer and sometimes it is hard to read thos letters and numbers. It is also irritating too.

Some Day--
As someone closer to your age, I'd like to offer some advice.
Be careful when preaching to the virtuous. In this world we live in, it is often necessary to speak out against evil; however, when in the midst of wise Catholics like the ones on this blog it's hardly called for.
Discussing bodily functions and parts that are germane to the topic at hand--bodily functions and parts that were mutilated in this young lady's case--is not within the realm of creating an occasion of sin.
Though, as Esau referred to, some of the accounts might have been overly vivid, there's hardly a need to call for the discussion to stop, as it is relevant to the topic at hand.
Sometimes it’s just better to lurk.
In Christ,
Kris

Some Day- I did not know, but I am not at all surprised.
I never said you hated girls, only that you seem to have a high ick-factor about female problems, such as those that will be spoken of in this type of mutilation; that is based on your seeming inability to comment on the point of the post.
"Dr. Eric"-- *lol*. I haven't heard that phrase used in years....
So... does ANYONE here think that it's actually to the girl's best intrest?

Ladies, if you don't want to take the pill. Look into a Chinese herbalist, he/she could really help you with your "unspeakable" female problems. Dang gui and rehemannia work wonders!
Mutilation of the sexual organs is an abomination! If I may address the topic at hand.
*My statements above were not evaluated by the FDA and were not intended to diagnose, prevent or treat any disease or illness. Don't medical advice from a stranger on the internet, check with your Medical Doctor before undertaking any diet, exercise program, or herbal therapy.*
Now my butt is covered. ;-)

Thank God that Gianna Jessen's parent's didn't stunt her growth. Otherwise, she probably would never have been able to even try to walk!

Sure, but I can only challange your last accertion with what I saw today at school.
You do realize I am still a junior right, in High School.
Everyone I grew up with since elementary is no longer a virgin.
And boy has it been tough for me. I have done everything to prevent near occasions of sin.
And they are simply unavoidable.
I try to apply the "the floor is chaste" or the ceiling, because even with dress code, it is pretty deplorable.
Just look at the way people come to church.
And not just girls, who you think I hate, but men who try to come as showy as possible.
And don't say temptations don't come to me.
Until now, I played football and wrestled since 8th grade, to burn off youthful energy.
Don't you think that attracts attention I don't want.
So please don't discredit me straight up on that subject.
And you know that description was not neccesary.
Can we continue as Catholics in thought here on the CORRECT subject?

The descriptions used by certain people here about themselves, are hardly neccesary.
Maybe you should talk to a few more women-- the most common response to a gal saying that her chest doesn't bug her is to imply that the woman is simply too small for it to be a problem.
Schools are now a brothel with books.
I most assuredly challange it, as does every other guy or gal who goes through school *without* drinking the sexualy-charged kool-aid, so to speak. Haven't been to a normal college, yet-- military instead-- but I rather doubt they're *quite* as bad as they are shown in popular culture.
Now that we've gone on and on about what you wanted to talk about, can we get back to that poor kid?

And Eileen R,
I talked with Mr. Jimmy on that stuff already.
We are good.

Esau,
I got these things down.
Who has not in the past 50 years?

OK JIMMY this is why you were voted "smartest"? blog....for those who don't know what vitriol is...
vit·ri·ol
Pronunciation: 'vi-trE-&l
Function: noun
Etymology: Middle English, from Anglo-French vitriole, from Medieval Latin vitriolum, alteration of Late Latin vitreolum, neuter of vitreolus glassy, from Latin vitreus vitreous
1 a : a sulfate of any of various metals (as copper, iron, or zinc); especially : a glassy hydrate of such a sulfate b : OIL OF VITRIOL
2 : something felt to resemble vitriol especially in caustic quality; especially : virulence of feeling or of speech
Eileen, I hope you can use the site. I can not tell you how much my husband and I have learned and are still learning. And from what we know, we would never ever do that, mutilate, our daughter. Never.

Esau,
No, I am really just ticked at the language used here. And like I said, we could be talking about how to get in shape for sports, which I play, and still I would say something, because it is not the place.
The descriptions used by certain people here about themselves, are hardly neccesary.
Now sex ed is deplorable. Why?
Because looking at truth other than truth is not truth.
It presents sex in such a bad way, and obviously, with an ulterior motive. I don't know how was it back then, but now I had to look away during this stuff. Not everyone is granted graces to not feel tempted and beat the temptation.
It is simply unacceptable.
Schools are now a brothel with books.
And who can challange that?

Some Day:
Please refer to what I've mentioned to you in the other thread "Desires For Other Things".
If you really do desire to become a priest, you really need to educate yourself even with regards to these matters since you might one day become in charge of an entire parish (that is, if you actually do become a priest) and may need to be aware of such matters in order to relate to them and those of your parish who may be experiencing similar issues under your care.

Some Day, you are the *last* person in the world to be talking about what's appropriate on this blog or not. You have a habit of making absolutely inappropriate comments, including that scandalous behaviour of yours on Jimmy's post about the ex-priest. I'm surprised you haven't been banned from this blog, to tell the truth. Rule 20 means there should be no arguing with Jimmy's advice in the comments, and you went on to pour out absolute vitriol against the man who'd asked Jimmy for advice.
You also seem to have a dismissive view towards women, so much that women talking in very dull and undescriptive terms about a problem that is completely relevant to this story. One of the reasons Ashley's parents gave is that they wanted to spare her the ups and downs and pains of the cycle. And plenty of women take the Pill because they want to soothe the pain, and their doctors believe that's the only way to do it. This is an issue where biology *crosses* with "higher subjects". We're human beings with physical bodies, not luminous souls in ether.
To the others, Thanks for the CCL resource. It's very interesting.

everyone has to go through sexaul education, unfortunately.
Some Day:
Brother, you are looking at the subject of sex as a bad thing when it actually isn't.
Remember what Jimmy said:
God himself designed us so that we would desire various things: food, human companionship, respect, love, sex, etc.
As he mentioned, it is when it leads us to mortal sin that it becomes bad.

Some Day-- it is greatly relevant, seeing as how several men mentioned that they didn't have first-hand knowledge of one of the reasons given for the mutilation, but they believed X.
The whole thing can be uncomfortable to talk about, but given that it's a large point, it's *quite* important to have solid information. If it bothers you to read about various female problems and solutions that have/have not worked, as well as sources for more information that's deeper in depth, maybe you should avoid posts that are deeply related to said subject?
(Lord knows I have to avoid entire blogs lest my ire grow into a monster.)
The simple, every-day truth of the matter is that a young girl had her uterus and breasts removed and was subjected to hormone doses for the supposed reason of making her life better.

AnnonyMouse is mine and I started it when I read that Jimmy didn't want anyone going as "anonymous"; blank with no name that is. So it was my first time to blog and I chose AnnonyMouse.
Well, I understand what you are saying but unless you were the woman with the problem and had been healed, YOU wouldn't understand.

AnnonyMouse,
That is your permanent blog name right?
Never seen anyone else use it.
Just wondering.

And the woman in the Bible had another problem.
Not the regular course of female biology.
Just know it is the consequence of the original sin, and accepting its unpleasantries will gain you a part of Heaven.

Don't think I am attacking you, please, I don't know why people take me for a guy with a ruler?
I know biology and anatomy pretty well.
Apart from liking science as a kid, doing sports in school, so read more, and getting A's in Honors Biology with studing too much, everyone has to go through sexaul education, unfortunately.
And I am not trying to edjumacate you.
Simply doing apostolate, as you are too.
Pulchrum, latin for beauty, is what I believe in english is called an intrancendental.
Beauty, is its real sense, is the reflection of God in creation.
And I would not only speak against this ladies things, but even if we started talking about supplements for weight training.
It is prosaic, mundane and not the object of this post.
Are we ok?

Like I find it comforting that the lady with "the problem with bleeding" was mentioned in the Bible and that Jesus healed her. That is comforting to me.

What does the "pulchrum" mean?
And I "gottcha" but I have to say we would leave with differing opinions.

Prosaic, as you found refers also to the everyday, meaning the everyday things we must face as a consequence of the original sin.
Things that should rarely ever be the topic of conversation, like now.
In essence, every conversation must leave oppertunity to elevate it to higher things, like now, which inevitably ends up talking about God in one way or another.
Get me?

If you are thinking you have a vocation to the priesthood, tho, don't you need to know about some of these things IN CASE you are counseling some people? I think A & P is a pre-requisite.

Okay, what does pulchrum mean? You are bound and determined to ebujacate me, eh?
Um. Maybe we could ask Jimmy to add a post or com box for WOMEN ONLY

Sure, I definitly see a grave wrong in that mutilation. It is first not helping the natural process, which is a must for medicine to be practiced legitamately.
Second, it is obviously attacking pulchrum,
that is to say beauty, because it is not normal, therefore contrary to the way God envisionss things, to have a person more that a foot smaller than God intended to.
But that doesn't mean to start a discussion on bodily functions and events.
We are above all, contemplating the moral asspects of this case.

prosaic
One entry found for prosaic.
pro·sa·ic
Pronunciation: prO-'zA-ik
Function: adjective
Etymology: Late Latin prosaicus, from Latin prosa prose
1 a : characteristic of prose as distinguished from poetry : FACTUAL b : DULL, UNIMAGINATIVE
2 : EVERYDAY, ORDINARY

Some Day, Point taken.
But we are discussing a little girl who was mutilated to AVOID these natural things that occur in girls. There is a lot of info out there on how to better care for ourselves. It may mean a change of lifestyle tho.

Not that its wrong, just wrong place.

Eileen:
CCL is Couple-to-Couple League.
http://www.ccli.org/

Prosaic stuff can be discussed elsewhere, sil vous plait.

Eileen, Couple to Couple League http://www.ccli.org/
They help couples understand their own fertility.
They have some good information on their, not just for couples. This book "Fertility, Cycles & Nutrition" I have heard is really good.

Sailorette, yes I have. It sometimes works, sometimes doesn't. But heat is always a good thing, even if it doesn't work entirely! AnnonyMouse, what's CCL?

Also, Wesley J. Smith has writen an interesting entry on the case in his blog.
http://www.wesleyjsmith.com/blog/2007/01/on-keepin...
Smith's blog is required reading to keep up with the frightening world of Bioethics.

Eileen, if you go to the CCL website they have some real good material on nutrition and menstrual cycle. Medicine can also affect "us" women.

Eileen- have you tried the "lay still with a hotpad on the pain" solution? Honestly, there aren't a lot of women who *can*, but if you're going to be out of commission either way....

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