Friday, January 05, 2007

The Ashley Treatment: Medical Ethics at the Docks

Treatment keeps girl child-sized
BBC News 4th Jan 2007

Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.
The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.
Along with hormone doses to limit her growth, Ashley's parents also opted for surgery to block breast growth and had her uterus and appendix removed.
They say the treatment will help to improve her quality of life. (read on...)

The “Ashley Treatment”,
Towards a Better Quality of Life for “Pillow Angels”
January 3rd, 2007
By Ashley’s Mom and Dad

Ashley’s Story

Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctor’s call her condition “static encephalopathy of unknown etiology”, which means an insult to the brain of unknown origin or cause, and one that will not improve.

Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our “Pillow Angel” since she is so sweet and stays right where we place her—usually on a pillow.

Ashley is a beautiful girl whose body is developing normally with no external deformities; see photos. She is expected to live a full life and was expected to attain a normal adult height and weight. Ashley being in a stable condition is a blessing because many kids with similarly severe disabilities tend to deteriorate and not survive beyond five years of age.
(read on...)

My comments:

Hi Friends,

I am certain that Ashley’s parents love her and what they have done on her was not out of selfishness.

However, I am uncomfortable that so much of Ashley’s normal anatomy and physiology were altered in order to ensure that she can have as “normal a life” as possible.

It is a truism that most cases like Ashley's would not have survived beyond early childhood (as mentioned correctly in their blog). So if the parents had not been meticulous in their caring, Ashley would have died sooner rather than later.

The real world out there is seldom in clear-cut “black or white” but mostly in shades of gray.

Ashley’s parents were faced with doing something drastic to endeavour that Ashley’s future was more predictable and her daily care more manageable. Hence they altered her hormonal secretions and removed her uterus and breast buds.

Before we become judgmental, do we realize that many medical decisions that we take for granted now would have raised many eyebrows in the not so distant past:

1.Taking medications to cure illnesses. If God had wanted one to live, He would not have let you be sick in the first place? Are we distorting the Almighty’s plan? ( but someone else would argue that since God allowed Fleming to discover penicillin, it must also been His will that diseases be wiped out? Comprehended?)

2. Non-essential lifestyle surgery- a double eyelid here- a repaired hymen there.

Society dictates what is acceptable . If you want it (whatever it is), who are doctors to deny your wish?

3. Organ transplantation- from whom? Patients go to China and within a week, perfect matching donors are found!

Where are these kidneys/organs from? Should we care that they are from Chinese prisoners ( who probably would have been spared if their blood/tissue-type were incompatible ) ?

Is it none of our business who gets chosen to be executed? ( oh yes, and the condemned prisoner's family gets billed for the bullet!)

Now that I have stirred sh*t ( again), let me say that I fully understand why some are for or against all the above issues. ( I sit very nicely and politely on the fence)

As I grow old(er), I become more tolerant, less judgmental. Life is too short to get uptight about everything!

Notwithstanding my open-mindedness, I will continue to stand on the proverbial pedestal and shout to whoever is willing to listen. Just like the “crazies” in Hyde Park,London condemning this government figure or that. In my days, Thatcher was a favourite target.

In fact (to digress), I remember vividly the day Thatcher was forced to resign in a kitchen coup, as that was the same day I passed my Edinburgh surgical fellowship exams. The Glasgow one I passed 2 weeks later.

The winter of 1990- How time flies.

Good luck to Ashley.

Dr.Huang Shoou Chyuan

1 comment:

Anonymous said...

Dr H: I sit very nicely and politely on the fence

Me too. Maybe that's why no one has commented on this post as yet. Such are the numerous grey areas in life, hard to say what is right/best or even which approach is more beneficial approach. :-)

Nevertheless, appreciate your sharing to improve our understanding because those in similar circumstances in Singapore would probably not have any voice (due to our lack of integration into society of people with any disability).