BS: Stunting a child's growth on purpose

Subject: BS: Stunting a child's growth on purpose
From: katlaughing
Date: 04 Jan 07 - 01:45 PM

Not sure where I stand on this, yet, but my initial reaction is abhorrence and concern of where this could lead: CLICKETY

Subject: RE: BS: Stunting a child's growth on purpose
From: katlaughing
Date: 04 Jan 07 - 01:47 PM

Here is a DIRECT LINK to the parents' website.

Subject: RE: BS: Stunting a child's growth on purpose
From: wysiwyg
Date: 04 Jan 07 - 01:55 PM

Mixed reaction here, too. How many of us would love to keep our children small, childlike, and holdable... How much moreso might I like to if she were mine... But I can't feel it would be up to me, if that were the case....

On the other hand, it is NOT up to me, it's up to them, and I can only assume they thought it through as best they could and made the best decision they could, in love. Bless her, anyway.

~Susan

Subject: RE: BS: Stunting a child's growth on purpose
From: wysiwyg
Date: 04 Jan 07 - 02:03 PM

PS, I posted an offer to send music to Ashley, on their message board. If I get a mailing address in response, I will be happy to collect items to forward to the family.

~Susan

Subject: RE: BS: Stunting a child's growth on purpose
From: Emma B
Date: 04 Jan 07 - 02:45 PM

I have worked with families like these too and have equally mixed feelings. The personal touch and handling is so important and so difficult with an adult build and ageing parents. I have deep respect that the parents are willing to devote the rest of their lives to caring for such a dependent child, who may never even be aware of the extent of their devotion, and think their views should be treated with respect too.

Subject: RE: BS: Stunting a child's growth on purpose
From: skipy
Date: 04 Jan 07 - 02:58 PM

I feel uncomfortable with it, but I am with Emma B on this.
Skipy

Subject: RE: BS: Stunting a child's growth on purpose
From: Wesley S
Date: 04 Jan 07 - 03:07 PM

I'm glad that none of those choices/decisions are ones that I have to make.

Subject: RE: BS: Stunting a child's growth on purpose
From: Andy Jackson
Date: 04 Jan 07 - 03:29 PM

When I first heard this news story I was absolutely horrified. The world has gone mad I thought....then I saw this thread and followed the link to the parents web site.
Now, although like Skipy I am uneasy with it, I can see that this is a very caring and logical way forward. And like Wesley , I'm glad it's not a decision i have to make.
My thoughts will be with the parents for the near future as I have a horrible feeling the media see a "story" here.

Andy

Subject: RE: BS: Stunting a child's growth on purpose
From: McGrath of Harlow
Date: 04 Jan 07 - 03:31 PM

I can imagine how a parent might make a request along these lines. Desperation leads to people seeking desperate solutions.

But I cannot imagine how doctors could be willing to comply. And I cannot conceive of a medical profession in which doctors who did so would not be disciplined and struck off the professional register.

Subject: RE: BS: Stunting a child's growth on purpose
From: akenaton
Date: 04 Jan 07 - 03:34 PM

A difficult decision. Everyone loves a child and feels for a handicapped child.
Many times I have seen a much loved child turn into a freak and a burden as they age.

I think I agree with Katlaughing that to start down this road could open the door to "culling" of children deemed imperfect.

Greater support for parents struggling to bring up a handicapped child woul be more valuable.
This support should include respite time for the parents as the child ages.

Child modification seems geared more towards the mental wellbeing of the parents than what is in the interests of the child....Ake

Subject: RE: BS: Stunting a child's growth on purpose
From: Andy Jackson
Date: 04 Jan 07 - 03:35 PM

But then I read he article from the parents !!

Subject: RE: BS: Stunting a child's growth on purpose
From: frogprince
Date: 04 Jan 07 - 03:37 PM

My hair stood on end for a moment when I first saw the thread title, but I immediately assumed that very special circumstances were involved. This is a very sad situation, and I can in no way judge the parents for their decision. The scope quality or Ashleys' life won't be limited any further than it would have been, and there will be no question of some "morally handicapped" male impregnating her some day. The question, now, though, is who will draw the line at which this sort of procedure is acceptable.

Subject: RE: BS: Stunting a child's growth on purpose
From: jacqui.c
Date: 04 Jan 07 - 03:56 PM

I agree with what has been said above. It appears that these parents are being very pragmatic in dealing with the future care of their daughter. Maybe there is a degree of 'convenience' to themselves but they, at least, are looking to keeping their child with them for the rest of their lives rather then consigning her to an institution. The measures that they are taking do have a practical purpose insofar as the comfort of the child is concerned.

I, too, would worry about the opening of a door but would hope that this type of treatment would be very carefully monitored to ensure that it is in the child's best interests. Maybe this case will make sure that happens.

Subject: RE: BS: Stunting a child's growth on purpose
From: Gizmo
Date: 04 Jan 07 - 04:13 PM

Agree with all the above.

Unsure now, still about this, yet the parents found it easy to make the decision.

I am glad I have not been put in that situation.

In some ways I feel that if they were going to do that proceedure, they should have done it much, much earlier in her life.

Then again, teens in the 60's and 70's who were given hormones to prevent excessive height, may not have had immediate side effects, but what about when they have been through the menopause, or their bone density? A justification to be told no side effects, may be misleading for the future - that is what makes me uncomfortable.

Secondly, if anything was to happen to the parents, and biologically they may die before Ashley, who will care for her then? It would be best if they have extra plans in place also trusted family, friends etc.

It must be so hard in that situation, and can anyone really say they would do anything different if given the same circumstances?

I wish the family love.

Nic

Subject: RE: BS: Stunting a child's growth on purpose
From: GUEST,mg
Date: 04 Jan 07 - 04:18 PM

it sounds very reasonable to me. Especially as people age the caring of a handicapped child becomes more and more difficult. mg

Subject: RE: BS: Stunting a child's growth on purpose
From: McGrath of Harlow
Date: 04 Jan 07 - 04:21 PM

"very carefully monitored"

But who is doing the monitoring? I am pretty certain that this would be penalised as unprofessional conduct in most places, and very probably illegal into the bargain.

I would have thought that the doctors involved must have had some kind of approval to do this from some sort of professional body.

I don't think there is any justification in criticising the parents for making the request. People do what they feel, they have to do. But a request is just that, a request. Complying with a request is something entirely different. Or soliciting such a request, which I would suspect is actually more likely to have been what will have happened.

Subject: RE: BS: Stunting a child's growth on purpose
From: katlaughing
Date: 04 Jan 07 - 04:28 PM

Thanks for your very thoughtful posts, folks. I still have all kinds of conficted feelings about this. It also leads me to think why can we not have the right to end our lives ala Kevorkian if someone else can make this kind (life-altering) decision for a child as these folks and their physicians have done? Also, I would be concerned that people decide to do this when other "Ashley-Pillow children" are even younger. I do agree with some of the positive reasons noted above though. It's a tough one and I am relieved it is not something I have ever had to face.

Subject: RE: BS: Stunting a child's growth on purpose
From: McGrath of Harlow
Date: 04 Jan 07 - 04:30 PM

biologically they may die before Ashley

They almost certainly will, if press reports are accurate in saying that she is likely to have a normal life span. Unless of course medical ethics in Seattle have moved on down the eugenic road by that time...

Subject: RE: BS: Stunting a child's growth on purpose
From: JohnInKansas
Date: 04 Jan 07 - 04:35 PM

As to where one draws the lines:

Babies with made-to-order defects?

"Prenatal testing creates controversial options for parents with disabilities

The Associated Press
Updated: 8:10 p.m. CT Dec 21, 2006

The power to create "perfect" designer babies looms over the world of prenatal testing.

But what if doctors started doing the opposite?

Creating made-to-order babies with genetic defects would seem to be an ethical minefield, but to some parents with disabilities — say, deafness or dwarfism — it just means making babies like them.

And a recent survey of U.S. clinics that offer embryo screening suggests it's already happening.

Three percent, or four clinics surveyed, said they have provided the costly, complicated procedure to help families create children with a disability."


I would suggest following the link and reading the entire article before leaping to an opinion on this one. Click "Print this" at the bottom of the first page, and just cancel the printer, to get the whole thing in one scroll.

Quite probably reading the whole thing won't change most peoples "first leap opinion" but it's only fair to see the whole thing first.

(Previously posted in the "Read it in the Newspaper thread" 21 DEC 06)

John

Subject: RE: BS: Stunting a child's growth on purpose
From: JohnInKansas
Date: 04 Jan 07 - 04:38 PM

Apologies for the boldface. I thought I got it turned off, but ... it's a hazard of copying from the view source and trying to remove all the stuff (<br> etc) that gets added.

John

Subject: RE: BS: Stunting a child's growth on purpose
From: frogprince
Date: 04 Jan 07 - 05:06 PM

As regards Johns'link, I might be able to feel some sympathy for those parents, but I simply couldn't go along with them. As for any medical personnel taking that route, I don't see how they could get past those basic words, "First do no harm".

Subject: RE: BS: Stunting a child's growth on purpose
From: GUEST,heric
Date: 04 Jan 07 - 05:48 PM

>I would have thought that the doctors involved must have had some kind of approval to do this from some sort of professional body.<

It was, of course, subject to review and approval by the hospital's ethics committee. (And Dr. Diekema happens to be the Director of Education at the Katz Center for Pediatric Bioethics. This was no wayward, loose cannon of a doctor (Kevorkian) acting on impulse.)   

I can understand the visceral reaction (who wouldn't have it?) I also understand concern for subsequent movement of the dividing line. However, I do not agree that if it is the right thing for this little person, then concern for future possibilities concerning other people and actors should prevent what's best for her. (For what little it's worth, I do think it is the best thing, as it has been described, for a person who will never even be able to change her position in bed.)

>I am pretty certain that this would be penalised as unprofessional conduct in most places, and very probably illegal into the bargain.<

Not penalized as unprofessional precisely because it would have to be approved by the ethics committee. I am pretty certain it is not illegal anywhere, yet. The politicians and political process will have to work it through.

Subject: RE: BS: Stunting a child's growth on purpose
From: GUEST, heric
Date: 04 Jan 07 - 05:49 PM

>little person< Oops. Typo. I meant to change "little girl" to "person," and failed to delete "little."

Subject: RE: BS: Stunting a child's growth on purpose
From: GUEST,heric
Date: 04 Jan 07 - 05:55 PM

I would also agree that if such an action were taken to benefit the parents, or society, then it would be egregiously unethical. But I do not understand that to be the situation, here.

Subject: RE: BS: Stunting a child's growth on purpose
From: GUEST,heric
Date: 04 Jan 07 - 06:02 PM

In fact, Diekema is the Chair of the American Academy of Pediatrics Committee on Bioethics.

Subject: RE: BS: Stunting a child's growth on purpose
From: Hawker
Date: 04 Jan 07 - 07:02 PM

I'm just so glad its not my child - not a decision I would like to have to make. I just pray that the media dont make her a freak in the future, she deserves love her parents have taken this decision out of their love for her. I send them all my prayers and hope that they have made the right decision.
There but for the grace of god..................

Subject: RE: BS: Stunting a child's growth on purpose
From: McGrath of Harlow
Date: 04 Jan 07 - 07:18 PM

This was no wayward, loose cannon of a doctor (Kevorkian) acting on impulse.)

That is rather what I suspected, and that's what makes it really pretty worrying. There is a history to this pattern of medical ethics in the States. It is not all that many years since medical ethics in the USA included a whole range of approved procedures now universally recognised as unethical. Just type "Eugenics + USA" in Google and see what comes up.

I would doubt if there are many ethics committees that would approve this particular set of procedures, at any rate in other parts of the world.

Subject: RE: BS: Stunting a child's growth on purpose
From: Andy Jackson
Date: 04 Jan 07 - 07:20 PM

As usual of course, the media have concentrated on the negatives in the case and seem determined to make the parents out to be selfish!! Not a word I would use when refering to them.
I now stand full square behind this brave and devoted couple,

Andy

Subject: RE: BS: Stunting a child's growth on purpose
From: skipy
Date: 04 Jan 07 - 07:28 PM

I am now wish Hawker (without the religion for me) & with Miskin.
Thank goodness (not God) that I never had to make the choices that life has forced them to make. I do not think that you can REALLY form an opinion on these sort of things if you are not wearing their shoes.
I respect them and wish them well, there will be even worse times ahead for them.
Skipy
Life is a game of cribbage, you can only play with cards that you are dealt

Subject: RE: BS: Stunting a child's growth on purpose
From: McGrath of Harlow
Date: 04 Jan 07 - 08:20 PM

The choice of the parents to request this, or their consent to it when it was offered to them, is not really at issue. I am sure they did what they saw as being the right thing for their child.

The choice of the doctors to carry it out, and the choice of the ethics committee to approve it, is a different matter. Doctors must take into account the wishes of carers, but in the final decision, they are not be bound by these.

Subject: RE: BS: Stunting a child's growth on purpose
From: GUEST
Date: 04 Jan 07 - 08:33 PM

It is an interesting and heart rending case no doubt about that. The parents could have washed their hands of the whole affair and put the girl in the care of social services. Let someone else make the decisions and do the caring. I admire them for their forethought and courage.

I have a friend with a daughter with a severe growth disorder. Projected final height of the girl estimated at between 32 - 42 inches.

They have refused growth hormone treatment due to the side effects and the fact that the doctors say it would only add a couple of inches onto her height anyway.

They used to post to a forum for parents of children with the same disorder, but stopped doing so after being criticised for refusing the available treatment. This case is the reverse of their situation, but the parents will get the same type of abuse from the same type of people. I am sure that coping and living with their daughter has made them strong enough to bear it.

Subject: RE: BS: Stunting a child's growth on purpose
From: Richard Bridge
Date: 04 Jan 07 - 08:57 PM

Wouldn't euthansia be more sensible? What would you do with a similar puppy or kitten?

Subject: RE: BS: Stunting a child's growth on purpose
From: JohnInKansas
Date: 04 Jan 07 - 08:58 PM

I suspect that manipulation of growth may be much more common than many realize, although I haven't seen many reports on just how much it is used.

I went through high school with a kid who "topped out" at about 4'8," and who really did seem to be bothered by his size. He showed up at our 20-year reunion as a 6'1" "grownup." I didn't get a chance to talk to him about it, but he did say that he "got treatment after he got away from his parents."

"Normal" growth can do unpredictable things too. One person of my peripheral acquaintance graduated from college believing he was "full-grown" at 6'3" but "put on a spurt" and was kicked out of the Marine Corps when he hit 6'17" inches because they couldn't keep him in uniforms. He volunteered that if he'd known what to expect he probably would have sought treatment, but by the time it happened it was too late.

I don't really know if a treatment for the tall one actually was available, since this was quite a few years ago. Stimulating growth/development when it's arrested for some reason has been a well-known treatment for a couple of decades perhaps; but successfullly arresting growth/development that occurs spontaneously (without extreme side effects) is a more recent thing.

John

Subject: RE: BS: Stunting a child's growth on purpose
From: Paul from Hull
Date: 04 Jan 07 - 09:16 PM

I saw this thread this morning, & when I left it, only Kat & WYSI had posted, but have been thinking about it on & off all day, & come back to it to find its generated no less interest than I'd have expected for such a very emotive issue, & very good points from all, IMO.

However, as most have said, we can be grateful to be not put in the position of Ashleys parents, & as a non-parent myself, I maybe have less undertanding of any parents than most here, but I find myself understanding of many of the views that her parents express, after all what are they denying Ashley by this process? To my mind, nothing, as its the case that she has little or no conception of herself & her state. To prevent the maturing process that she will be unaware of, they are preventing what would be a reduction in her quality of life, eg: menstruation, for one thing, which for Ashley, serves no purpose, as I am sure we can all agree, it would never be deemed fitting & appropriate for her to ever bear children herself, as it would seem that could only ever happen if " some "morally handicapped" male impregnated her" as Frogprince said. Nor can Ashley ever turn herself in bed, so the notion of keeping her size & weight low seems more a kindness to her than a convenience for her parents, to me.

While it does, perhaps, set something of a dangerous precedent, & that is of course worrying, it does point up what many others here have said, the ramifications of this, & much else, is beyond the depth & breadth of current Law, which should be bending all its efforts to an appropriate level of governance of what science can legally & ethically be allowed, & not allowed, to do.

Some 15 or 20 years ago, if I remember correctly, in the UK, there was an issue around a Mentally Handicapped girl in her teens (I say Mentally hndicapped because the term Learning Disability does not adequately describe the impairment this girl suffered) though she was considered to have a mental age around six, as I recall, as best it could be guaged(sp?). She was, frankly, promiscuous, and though I cannot remember if she lived at home with family or was 'In Care', it seemed she was finding ample opportuity to associate with males.

The Social Services Department ruled that it was unethical & wrong to sterilise the girl, despite the fact she could not in any degree be relied upon to use contraception in any form (I don't kow why a 'Coil' was considered inappropriate for her, though) They even stated that sterilisation would be a breach of her Rights. They seemed incapable of seeing the unavoidable point that likely several pregnancies were likely to result form her conduct, which they fully agreed shuld, & would, not be allowed to come to term.

So, according to them, she was allowed to get pregnant, but not to give birth.

Now thats playing God....

Subject: RE: BS: Stunting a child's growth on purpose
From: catspaw49
Date: 04 Jan 07 - 11:59 PM

Like Paul, I've thought of this one most of the day. Coming back now and reading again, I can see just how deep this one goes. I can't help but think back to the times when parents were encouraged to institutionalize kids at an early age because they were never going to be even close to "normal." Now we are a bit more enlightened and for many children, they will never have need to be anywhere else but home.

Many of you are troubled it seems that the parents may be getting some benefit here by doing this. I submit that what they get is tied up in what they want to do and woven into the fabric of this plan.......and I can find nothing wrong with that. One of the things that I picked up on right away was the description of Ashley as seemingly happy. If I read them right, the parents here are concerned that she stay that way. What will help her stay that way is to remain where she is with things and people she knows and can do things with. I don't know how much of that she can actually know and all we have to gauge is what we can see in her reactions.

If doing this keeps her in a happy state and makes it easier on the parents to help her, what can be the problem?

Obviously my son Tristan is not nearly as bad as Ashley. And yet, above all else, Tris has always been a happy child and for Karen and I the number one focus in any decisions we have made is to keep him happy. Over the years we have gone against recognized authorities and their suggestions because we could not and would not put Tristan in a situation where frustration or unfamiliarity would cause him to be upset......angst I suppose fits here. At times that made it easier on us as well, but just as often made it difficult.

I salute these parents as they have the best interests of the child in the forefront. Their thoughts and actions as I read here are all geared in the best interest and I would only wish that many courts put children as far out front as they do.

Spaw

Subject: RE: BS: Stunting a child's growth on purpose
From: GUEST,JTT
Date: 05 Jan 07 - 06:15 AM

I have a friend, a little, slender woman with no man, who is the sole carer for her 5'9" handicapped daughter, a fine big strapping girl who is completely wheelchair-bound and has to be put onto the toilet or into bed with a pulley.

My friend is undoubtedly going to die of heart strain at some stage. She gets a couple of weeks' respite a year, and that's all.

I understand the parents' decision to stunt their daughter's growth. It would be different if there was hope of a treatment that would cure her.

(As for the story about people deliberately having handicapped children - that's criminal.)

Subject: RE: BS: Stunting a child's growth on purpose
From: McGrath of Harlow
Date: 05 Jan 07 - 07:01 AM

Pretty clearly JTT's friend has been treated pretty appallingly by the people who should have helped her. The people responsible - politicians, social workers, whatever - should have their lives made hell until they provide the help to which she is morally and legally entitled.

Fighting the system to make it provide that kind of help is a struggle, and I know only too well about it from personal experience. And it can't be left to the people who are up against it to take on the system. We get exhausted trying to do that on top of dealing with the difficulties of daily life and daily caring.

I wouldn't have any time for people criticising the parents in this case, and I haven't seen any indication of that kind of thing happening.   People in a desperate situation have to settle for the best they can get, and sometimes it's very much less than the best they are entitled to expect.

Subject: RE: BS: Stunting a child's growth on purpose
From: Bernard
Date: 05 Jan 07 - 07:20 AM

Mixed reactions from me, too.

Whilst I applaud the parents' wishes to minimise the problems for Ashley as she ages, they are acting without her express permission.

A difficult situation.

Admittedly Ashley is in no position to make any such decision, but it sets a precedent for others to follow, who may not be quite so honourable as Ashley's parents.

I'm glad it's not me...

Subject: RE: BS: Stunting a child's growth on purpose
From: Mrrzy
Date: 05 Jan 07 - 09:13 AM

Very interesting view on BBC - the Brits they were interviewing were appalled, mostly that America is so backwards that we would leave a poor family in this situation. Apparently there is a feeling that if we had socialized medicine, there would be a support structure in place for the family, and this choice would never have arisen.
I also understand that the doctors thought of it, rather than the parents.
The only thing about it that bothers me is the removal of the breast buds. The rest benefits the child, but that bit seems only to benefit the parents.
And I am not seeing any info on how the hormones are administered - if she has to take shots, it's not OK; if they are fed to her with everything else in the tube, fine.

Subject: RE: BS: Stunting a child's growth on purpose
From: Gizmo
Date: 05 Jan 07 - 09:42 AM

On reflection I have come to the thought that ultimately the decision lies with the parents.

Ashley is only brain wise 3 months old. Although physically she is older, the mental age is 3 months old.

Therefore - if you had a 3month old baby, with heart problems say - would there be any criticisms against the parents and doctors carrying out a life threatening operation without the childs consent? No - why? Because they are acting in the interest of a baby, giving it the quality of life all adults involved the child has the right to have even if the chances of survival are very very slim.

What has been done to Ashley, is it any different? No - why? because despite her growth, she is a baby. Therefore decisions rest with parents and doctors etc. No criticisms should be made of either. They are doing what they believe the best for their baby. The only difference being, their baby will always be mentally so, yet physically not.

There seems to be less recriminations in more cases which deserve questions to be raied than this one deserves.

Taking away her dignity? I'm not sure about anyone else, but the most dignified thing I did as a 3mth old was throw up my food and belch in public, and smile at those I recognised. If my mum dressed me up as a little Barbie doll - I would have had no more sense to question it than to suck my thumb. Dignity?

The parents clearly love their daughter and their other children very much. IT'S NOT ON THE OUTSIDE WHICH COUNTS, it's the inside that matters - albeit in a burp or vomit.

Subject: RE: BS: Stunting a child's growth on purpose
From: Mrs.Duck
Date: 05 Jan 07 - 10:55 AM

My view is that anything that can be done to help the child get the best care and love possible cannot be a bad thing. Making it easier for her parents to look after her and extend the time they can devote to her by keeping her at a size they will still be able to lift in later life seems to me to be an act of love.

Subject: RE: BS: Stunting a child's growth on purpose
From: Amos
Date: 05 Jan 07 - 01:23 PM

I would think that even more compelling than their decision to inhibit her growth in order to better her future is the question of how and why this condition developed. That's the key issue medically, genetically, and socially.

If it were possible, for example, to have predicted by cellular analysis that these parents had a certain probability of this child with this condition unless they had their genome modified somehow -- a scenario that cannot occur now, perhaps but will be possible in the near future -- would it be an unethical intervention? Messing with Fate? Hubris?

Seems to me not -- I'd guess it owuld be an intelligent and compassionate thing to do.

A

Subject: RE: BS: Stunting a child's growth on purpose
From: Gizmo
Date: 05 Jan 07 - 01:45 PM

The problem with messing with genomes, chromosomes etc, is that it is such a fiddly thing to do, with a small chance of 1 success in many, that ethically is it worth the deaths of many embryo's for something which may have occured not by genetics, but by the shock of birth itself?

Where would genetic modifications end?

If it were not for genetic mutations, we would not be in the human shape we are now. What makes us human are the odd mutation which makes such a stark difference from the norm, but can survive in a way the original parent couldn't.

Our bodies adapt to the world we live in by mutations, and playing around with imperfect genes will thus eventually lead to a race which could be wiped out by a mutated virus or cold due to genetic inbreeding (for want of a better word). Besides - who can say what the perfect genetic code is? Because there would obviously have to be a standard.

I think it is good to know how to do things in theory, but practice is different. There are things we should leave alone, and IMO genetics is one of them.

Subject: RE: BS: Stunting a child's growth on purpose
From: GUEST,Melani
Date: 05 Jan 07 - 02:33 PM

Every family with a disabled child has to make their own decisions based on their personal circumstances. The decision made by Ashley's parents will probably keep her from having to be institutionalized in later years, when she might have grown too big for her mother to handle at home. It is usually better for people to be cared for by family members who love them rather than hired caretakers.

I knew a family with a similar situation--a child unable to move at all, with a mental age of three months, as a result of previously unknown congenital hydrocephalous. At two years, he was a big husky kid. It was projected that he might not make it past age 5, since the doctor figured he would probably eventually contract pneumonia as a result of being unable to move. He asked the parents, "How agressive do you want me to be when that happens?" They were appalled at all the available choices. They had wanted a big family, but had concluded they could never have any more children, since a boy would have a 50% chance of having the same disorder, and a girl would have a 50% chance of being a carrier. The fetus at that time could not be tested (it was about 15 years ago, don't know about tech advances since then), so their only option would be to abort any boy, and they weren't comfortable with that. I haven't seen them in all this time, and don't know what ultimately happened, but based on his size at age 2, it's a sure bet that if that kid is still alive, his mother can no longer lift him.

For the record, I had an amnio before my son was born, which was normal. The cause of his developmental disability is still unknown.We are fortunate in that his disability is not as severe as Ashley's or a number of his classmates, and he is having a pretty fun life. So ya get what ya get--and we like him.

Subject: RE: BS: Stunting a child's growth on purpose
From: McGrath of Harlow
Date: 05 Jan 07 - 04:36 PM

Ashley is expected to have a normal lifespan, which means that the parents aren't likely to be around in later years, maybe for the last 20 or 30 years of her life.

The Guardian printed a piece from the website of the family, today, Ashley's story. A very powerful piece - and one of the most telling things about it, for a reader in the UK, is a passing remark "other than her mom and dad, Ashley's only additional care givers are her two grandmothers, who find her weight even more difficult to manage. We tried hard and found it impossible to find qualified, trustworthy and affordable care providers."

"Affordable"! Thank God I live in a country where "affordable" for families doesn't have to determine everything. Life's hard enough as it is, with a totally dependent adult daughter, but at least, with enough battling, worries about "affordable" don't have to add to them.

Also worth reading is another piece in the Guardian today, by an English mother with a 17 year old highly dependent daughter - 'Unless you've been there, it's very hard to judge'. It says most of the things I think need saying.

"This is a solution for the next few years, maybe, but is it really a proper long-term solution? I don't know. It's very hard to say. It's hard to put yourself in someone else's place.

I'm really loath to criticise, because unless you've been there, or even if you have, nobody can tell what it's like on a day-to-day basis for that particular family, and I'm a bit wary that this story could set parents of disabled children against each other. I think we need to hang in there together, because what this story shows is that none of us actually gets very much in the way of support. It says that if you've got a disabled child, every family's for themselves. And clearly these people have found their own solution, and it's quite an extreme one.

I think you do have to accept that your disabled child is a whole person who is going to grow up. And I would rather see resources concentrated on dealing with the reality of it, and the truth is that there aren't that many, wherever you live."

Subject: RE: BS: Stunting a child's growth on purpose
From: GUEST,heric
Date: 05 Jan 07 - 06:07 PM

>Thank God I live in a country where "affordable" for families doesn't have to determine everything<

Affordable doesn't determine everything. It was only one of three factors mentioned. You left out qualified, trustworthy. Baby Ashley could be taken care of with government funds. Her parents wish to spend more to optimize the three variables listed.

Subject: RE: BS: Stunting a child's growth on purpose
From: McGrath of Harlow
Date: 06 Jan 07 - 07:56 AM

Formally qualified isn't in itself important. Parents don't have formal qualifications. People with formal qualifications can in fact sometimes be terrible at caring for vulnerable people. Trustworthy? They can be found. The world would fall to pieces overnight without trustworthy people.

Having the money available to employ help is the key. And that doesn't come cheap, because it's demanding work. Clearly enough isn't forthcoming from public funds in this case to meet the need, hence "affordable". If that's so, shame on the society and the country involved. "Could be taken care of"... sounds a bit like the language of the workhouse.

Subject: RE: BS: Stunting a child's growth on purpose
From: GUEST
Date: 06 Jan 07 - 10:53 AM

Aye it's a rocky downward path child modification.
Just think of the squeals from this forum if skin lightening drugs or male hormone implants were to be allowed to produce the norm we want.

Subject: RE: BS: Stunting a child's growth on purpose
From: akenaton
Date: 06 Jan 07 - 11:13 AM

Sorry not logged in for that post...Ake