"Frozen girl" debate

[Naheezah]

"Frozen girl" debate



US doctors are helping to keep a severely disabled girl child-sized at her parent's request.

Ashley X was born with severe and permanent brain damage, called static encephalopathy.
The nine-year-old has the mental ability of a three-month-old baby and cannot walk or talk.
Her parents argue that keeping her "frozen" as a girl rather than letting her go through puberty and growing into a woman will give her a better life.
They authorised doctors to remove her uterus to prevent menstruation, to limit her breast growth through the removal of breast buds so that she would not experience discomfort when lying down, and give her doses of hormones to stop her growing taller.
Opponents have accused Ashley's parents of "Frankenstein-esque" behaviour - of maiming the child for the sake of convenience.
:X

source>http://news.bbc.co.uk

[lolwatever]

feel sorry 4 the girl.... i dont know what to say tho, im sure her parents want the best 4her... but i wonder wat she feels? :s

:w:

[samsam]

That's awful , all your life stuck as a girl , but i agree if she had a mental ability of a 3-month baby , it would be harder for her going through adolescene

[Nuseyba bintkab]

i feel sorry for her and her family

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[glo]

I really, really feel for this family - and I can understand why they took this decision.

I was listening to a radio programme yesterday on this, and some human rights people were very much against intervening in Ashley's life in this way - saying she had a 'human right to go through puberty and grow into adulthood'.

Part of me feels that Ashey should go through her life as God has intended it. And that would mean going through the developmental stages as everybody else.

But I can understand why the parents made their choice, and I do believe that it is in Ashley's best interest.
I work with adults with profound mental and physical disabilities to the level of Ashley's disabilities ... and I don't think many of them benefit from the experience of 'being adults'.
Many appear to have little if any awareness of what it means to be 'adult'. It's not like they are able to make life choices and life experiences like others, due to the restrictions of their very severe disabilties (I am not saying that disabled people on the whole cannot experience adulthood or have meaningful adult lives - I am talking about people with extrememly profound disabilities here)

I feel that for somebody like Ashley adulthood holds many disadvantages rather than advantages:

• adolescence with it's hormonal changes may be a confusing experience for her
• monthly periods (including period pains) will be difficult to manage
• It will be more difficult to carry/lift/cuddle her and to carry out personal care

And consequently it will become more difficult for her parents to care for her.

I admire this couple for the commitment and love they have for their daughter.
May God bless them and protect them!

Peace

[...]

what they did isn't natural :s... Allahu a3lam..

[Curious girl2]

I really dont think that anyone could really know what made this family come to this decision until they have had to change a dirty nappy in an 11 year old unresponsive, unco-operative boy or had to change a menstrual pad for a 15 year old who has the mind of a 3 month old baby.

Peace CG

[Musaafirah]

Thinking about it, it must have been THE most difficult decision for the parents to have made. I mean, she can't even hold her toys to play with or anything.
Just imagine what her parents must have gone through to make the decision...
Though havin said that, is there not the chance of her developing? Maybe at a later stage? Just wondering..

[glo]

I really dont think that anyone could really know what made this family come to this decision until they have had to change a dirty nappy in an 11 year old unresponsive, unco-operative boy or had to change a menstrual pad for a 15 year old who has the mind of a 3 month old baby.

Peace CG

I very much agree with you, curious girl.
And there were parents with profoundly diabled children on the radio programme yesterday, who said the same thing!

It is fine for people to have grand theoretical and ethical aspirations and ideas ... but it is those who live in the real-life situations, who should have the right and understanding to make realistic choices.

peace

[soulsociety]

:sl:

Are they sure they won't find a cure for it?

Remember that film about Lorenzo's Oil? In Star Trek, the doctor killed his father who was suffereing from an illness, at his father's request. Two weeks later they found a cure.

If they had enough money they could take care of her as an adult? As an adult you would need more carers to lift her and so on.

Anyone have a fatwa on this issue?

[Jayda]

hola naheeza,

i think i saw something about this on CNN... i am afraid that health care defines its ethical borders with arrogance now... stem cell research, euthanasia, and even this i thought were all science fiction... but the world is filled with brilliant and misguided doctors trying to be the first to do something... i stopped working in secular hospitals because i had an experience with this...

Dios te bendiga

[Trumble]

.. i am afraid that health care defines its ethical borders with arrogance now... stem cell research, euthanasia, and even this i thought were all science fiction... but the world is filled with brilliant and misguided doctors trying to be the first to do something...

It is, or at least should be, up to society to define the borders of medical ethics, not just the medics. You make it sound as if the public at large is opposed to stem cell research and euthanasia in all cases while 'misguided' doctors are not. Clearly, that is not the case. There are many different opinions both within the profession and outside it.

[Pygoscelis]

what they did isn't natural :s... Allahu a3lam..

Depends on what you mean by "natural"

If you mean that they interfered with what would happen absent technology, ALL medicine does that.

[جوري]

If anyone here practices medicine in the U.S it is fundamental that they know that there is an ethics committee that dictates what is well--ethica!
different opinions don't preclude that doctors do what the ethics committe mandates at least here in the United States, that is a UNANYMOUS APPLICATION WITH THE EXCEPTION OF EUTHANISIA BEING ALLOWED ONLY IN THE STATE OF OREGON. AND THAT IS IF THE DOCTOR IS UNCOMFORTABLE COMMITTING SUCH AN ACT HE IS TO REFRENCE A PATIENT IN THAT LONE STATE AS FAR AS WE ARE CONCERNED.
number one and above all RULE and is very basic one at that --
DO NO HARM
secondly where parents naturally are able to decide for a minor, they are not able to decide when there is a "life or limb" saving procedure. Anything that would cause this above young lady harm in any way or form would mandate that this go to a court of law in which case rule number one again applies.
I won't get into the rest but the job of clinicians is to help pts be comfortable in life and comfortable as they pass into the next .. their job isn't to play G-D.
Dr. Koverkian and others who are hyper-vigilant in their practices end up jailed and if he were to put down on paper what he practised in real life he wouldn't pass any licensing exam or be able to practice medicine period.
Are their a$$hole doctors out there. You bet. But that is true of any circle.

for the last poster.... NOT ALL MEDICINE interferes with technology. Surgery has existed for ages absent of modern day techniques, in fact short of prescribing pills many which are still derived from natural plants (vinca alkaloids) for instance for Ca. pts, or (digitalis) for heart; TPA, Quinine etc etc all doctors do is help the body heal itself naturally. I would refrain from using words as ALL, or never -- any absolutes in general.
peace! oh yeah G-D is great and above all
35.إِنَّمَا يَخْشَى اللَّهَ مِنْ عِبَادِهِ الْعُلَمَاء إِنَّ اللَّهَ عَزِيزٌ غَفُورٌ {28}
--those of His servants only who are possessed of knowledge fear Allah; surely Allah is Mighty, Forgiving....

[Tania]

I know during the pregnancy the doctors force you to go under x tests, they even can put end to pregnancy if they discover certain genetics disease. I can't understand how its possible to born an ill child after x tests:confused:

[glo]

I know during the pregnancy the doctors force you to go under x tests, they even can put end to pregnancy if they discover certain genetics disease. I can't understand how its possible to born an ill child after x tests:confused:

I am not sure what you mean by x tests.
Some disabling conditions can be determined during ultra-sounds scans or through a test of the fluid in the womb or through other tests.

But not all women are tested to such an extend. Some tests are only carried out if

• the woman is in a high-risk group (i.e. above a certain age or with previous children with certain disbilities), and/or
• the woman is willing to have the test (some tests have associated health risks), or
• the woman pays privately

Certainly no doctor can force a woman to have any test (at least not in this country)
Neither can a woman be forced to terminate her pregancy on the grounds of bearing a disabled child. Many women who find out that they carry a child with Down Syndrome or Cerebral Palsy or any other condition choose to continue with the pregnancy ...

Some conditions cannot be detected by any test at all.
And other conditions are caused during the birthing process (i.e. lack of oxygen to the child) or during very early childhood (i.e. infection)

So by no means can modern medicine rule out all disabling conditions prior to birth.

[Tania]

x tests i wanted to say several tests. Here the women are forced to go to doctor each month or each 2 months. I can't remember exactly from my colleagues.
Why the women would choose to have a baby like Ashley when i am not sure even at this point if she knows what it means to have a life.

[glo]

Why the women would choose to have a baby like Ashley when i am not sure even at this point if she knows what it means to have a life.

According to a medical dictionary Ashley's diagnosis of 'static encephalopathy' means encephalopathy (brain abnormality) that will not progressively worsen. It is not a specific condition or illness, but a general terms for brain abnormality.
There can be many things which influence or cause brain abnormality ... such as the mother contracting a viral infection during pregnancy or usings drugs during pregnancy, genetic causes during the fetal development, birth trauma, lack of oxygen during birth, premature birth, accident or infection during early childhood ...

Reading more about Ashley, it seems that in her case the causes for her brain damage are unknown - so at no point could the parents make a choice whether to terminate the pregnancy or not ...

But generally speaking, while certain tests can tell you whether an unborn child has a certain condition (such as Downs Syndrome or CP), it cannot tell you how severely the child is affected,and to what extend it will affect his/her life.
Cerebral Palsy, for example, in it's severe form, can leave a person unable to speak, walk, swallow correctly, care for themselves, be continent ... and you may say it's a very disabling condition!
In it's mild form you may have people who have no problems at all leading an independent and fulfilled life ... and you wouldn't even know that they have a 'disability'!

When parent's are told by the doctor that test X has shown that their child has CP, they have no idea how severe the condition is going to be - so they could choose to terminate a pregnancy which would lead to a very able and independent child being born, or they could choose to go ahead with the pregnancy and give birth to a profoundly disabled child.

It isn't an easy decision to make!

[Umar001]

Man inshaAllah she's geting to go Jannah.

[جوري]

They don't force they suggest with bravado. Believe it or not if they "force" a test on you that is grounds for suing. it is called an assault. Most pts. don't know that I suspect. However you must sign release forms removing your doc from any liability in the case that you do have some disease of bacterial colonization in the birthing canal that may lead to the demise of your baby. It is a risky business and everyone is suing happy these days. if/when they "force" it is because of bad incidents where the pts. decide it is the doctor's fault their baby is suffering from such and such. And the way ambulance chaser lawyers are always ready to hand out their card for doctor mal-practice should really clue you in on why. OB/GYN has the highest liability insurance than any other form of medicine. Would you pay nearly a $250000 a year for insurance? imagine how much your net profit would be after you have paid all other fees like your employess your testing supplies, your office space. I have seen people bankrupted just because a jury wouldn't side with a Doctor named Lee than a "poor lady" from downtown.....
If you don't want a test I promise all you have to say is I refuse this test. and sign a form and you are good to go. A doc only needs to fully explain to you what the risks are for not getting it and make sure you understood what he said. Because people start suing even over that. "well he was speaking medical jargon and I didn't understand"-- at least that is how it is run in the U.S again other countries have different laws but I am not sure that any woulf force treatment.

[Jayda]

It is, or at least should be, up to society to define the borders of medical ethics, not just the medics. You make it sound as if the public at large is opposed to stem cell research and euthanasia in all cases while 'misguided' doctors are not. Clearly, that is not the case. There are many different opinions both within the profession and outside it.

hola Trumble,

all medical ethics boards base their ethics protocols on something called the Hippocratic oath which says this:

I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfil according to my ability and judgment this oath and this covenant:

To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art - if they desire to learn it - without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but no one else.

I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.

I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.

I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.

Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.

What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about.

If I fulfil this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.

alternately there is also the international Physicians Oath which says:

# I solemnly pledge myself to consecrate my life to the service of humanity;
# I will give to my teachers the respect and gratitude which is their due;
# I will practice my profession with conscience and dignity; the health of my patient will be my first consideration;
# I will maintain by all the means in my power, the honor and the noble traditions of the medical profession; my colleagues will be my brothers;
# I will not permit considerations of religion, nationality, race, party politics or social standing to intervene between my duty and my patient;
# I will maintain the utmost respect for human life from the time of conception, even under threat, I will not use my medical knowledge contrary to the laws of humanity;
# I make these promises solemnly, freely and upon my honor

acting in the best interest of the patient, and doing no harm are essential... sometimes these things are not clear, and sometimes they are deliberately made to seem unclear so that a controversial treatment or procedure could be pushed through.

all states still revoke licenses to practice for performing euthanasia, the AMA harshly condemns it, and most ethics boards consider stem cell research unethical, no approved stem cell therapy procedure has ever passed an ethics board...

it is important to remember that a patient is a person, an individual life and not a political issue. Doctors are first responsible for protecting this life, and sometimes that can run against the better interests of larger society. when a doctor is entrusted with a life they must do everything they can to protect it...

a perfect example of the nightmare that can occur when society is given the right to a say in a patient's well being is Terri Schiavo, whos well being was being debated in congress instead of in the hands of her doctor whose ethical responsibilities were to do everything medically possible to treat her, without causing harm.

ethics and laws are not always the same, good physicians will always use their knowledge for the benefit of the patient and to cause no harm... even if society says otherwise, as was the case with many doctors in Germany when the Nazis instituted euthanasia programs, deliberately ordered doctors to run experiments on unwanted people and other such things... there were many doctors who refused and they were true to their oaths.

Dios te bendiga

[Jayda]

just to say something else, the reason i find this so unethical is that it is completely unnecessary... her parents are doing this to make it easier for them to care for her at home at a later time in her life, it is almost completely unnecessary surgery. on top of this it is extremely drastic... she is having a double masectomy, extensive reconstructive surgery, a full course of hormonal treatment that will continue through the course of her natural life so that she will never have to age...

the condition doctors are treating her for is not age... age is not a disease, they are treating her for a brain disease and it is shameful to even say that their excuse is even a tentative connection... obviously this is a groundbreaking procedure with research opportunities in many disciplines, and doctors are rushing to the opportunity of "curing age" as it will be presented in the headlines...

they are not acting in the best interests of the patients, they are acting in the best interests of the parents and themselves... and they are doing harm with this needless and drastic procedure, it is altogether shameful and the ethics board that allowed this to happened should be ashamed of themselves...

[glo]

I hope you don't mind be saying so, Jayda, but those are rather judgmental words.

Don't you think that these may be loving parents who want to be able to provide care for their daughter, rather than having to hand her over into the care of others?
Don't you think it may be in Ashley's best interest to be cared for by those who love her the most?

I work with parents who spend their entire lives struggling and fighting for their disabled children, for care allowances, for aids and adaptations at home, for day care provisions etc ...
I would not condemn any of them. And neither would I wish their struggles on anybody else.
These are not parents who will see their children grow, mature, become independent, study and get a job, marry and raise their own families ... these are parents who know that they will care for their children as long as they have the strength to do so.

I don't know if Ashley's parents have done right or wrong by her, and if their decision was according to God's will or not, or ethical or not - but I cannot find it in my heart to have anything but respect and admiration for them ...

Peace

[Tania]

Just to understand Glo, because its seems you know a lot about her disease, Ashley can understand something from her house life. For example she can ask for food, to walk or other basic needs :? Or she has no idea neither who are the people which look after her, neither of the house objects.(You can talk with her because she can't understand.)

[glo]

Just to understand Glo, because its seems you know a lot about her disease, Ashley can understand something from her house life. For example she can ask for food, to walk or other basic needs :? Or she has no idea neither who are the people which look after her, neither of the house objects.(You can talk with her because she can't understand.)

I don't know exactly, Tania.

Ashley is described as having the developmental age of a three-month-old.
If you know any babies of that age, then imagine a 9-year-old with the level of ability a three-month-old would have: She cannot walk or talk or even express her needs clearly by other means such as signing and gesturing. She cannot care for herself, she needs feeding and changing etc ...
But chances are she knows her immediate surroundings and she can respond to (perhaps by smile or turning her head towards) familiar sounds, objects and people.

I am guessing a little here, because I don't know her circumstances exactly - but I have worked with and known a good few people with that level of functioning.

[Tania]

It means she did nothing from what a child is suppose to do. What a life :(

[glo]

It means she did nothing from what a child is suppose to do.

Yes, you are right.

What a life :(

Well, who are we to judge whether her life is happy or not. It may not be 'meaningful' in the way adults would perceive it.
But however we may feel about it, Ashley is in this world, and she should have her life made as comfortable as possible ...
Three-months-olds need very little to be happy and content: they need to be fed, free from pain, clean, warm, cuddled and loved.
As long as she gets those things, chances are Ashley is a happy person.

She will never do any of those things we may perceive as 'achievements' in life - but then, she doesn't know what she is 'missing' and therefore doesn't have any desire for it.

[Daffodil]

menstrual pad, what menstrual pad? if shes like a 3 month old baby then surely she wears a nappy as she cant go to the toilet so thats no issue,

im sorry but god can do miracles and its not fair on this poor little beautiful girl to have parts of her body removed just for the convenience of their own personal life.

they are messing with gods creation. they shud let her be, stop tampering with her body. i feel so sorry for the girl i want to adopt her, her parents are insane.