"Frozen girl" debate

  • Thread starter Thread starter Naheezah
  • Start date Start date
  • Replies Replies 27
  • Views Views 5K
Naheezah

Naheezah

Esteemed Member
Messages
148
Reaction score
21

"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
 
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:
 
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
 
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..
 
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
 
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..
 
Curious girl2 said:
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
Click to expand...
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
 
: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?
 
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
 
Jayda said:
.. 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...
Click to expand...

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.
 
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....
 
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:
 
Tania said:
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:
Click to expand...
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.
 
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.
 
Tania said:
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.
Click to expand...
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!
 
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.
 

Similar Threads

Back
Top