Friday, January 5, 2007

Forever Young

If you have young children at home, don't you occasionally find yourself wishing they could stay that way forever? I do. I have two toddlers, and it's one of my greatest pleasures to come home after a hard day at the lab bench, grab them up into my arms, and cuddle. Oh, how I'm trying to emblazon those moments into my brain so that I'll be able to recall them when my kids are teenagers and angry at me because I haven't bought them that cell phone / PDA / MP3 player brain implant they want so badly (I'm extrapolating a dozen years into the future – who knows?).

Now imagine if, by some bizarro twist in bioethics, you were certain it was in your child's best interest for her to remain small forever and you were able to convince doctors to do something to make it happen. Yes, purposely stunt her growth for the rest of her life.

Well, a couple in Chicago did it to their 9-year old girl:
http://www.cnn.com/2007/HEALTH/conditions/01/04/ashley.treatment.ap/index.html

Little Ashley, age 9, is severely mentally and physically handicapped, unable even to roll over much less walk or talk, but she responds to others, including smiling. Her parents decided that their "pillow angel" (as they call her) will be more manageable if she remains 4-foot-5 for the rest of her life, thus easier to involve in family activities, be moved around, prevent bedsores, and cuddle. To achieve this, they talked some doctors in Seattle into putting her through an intensive hormone therapy. If things go as planned, she'll never go through puberty and will never grow taller. It's already working.

Why, she's a regular Peter Pan. "All you need is trust and a little bit of pixie dust!"

But they didn't stop there. They also removed her uterus to save her from potential pregnancy due to rape and from the discomfort of menstruation. They surgically removed her breast tissue to save her from the discomfort of large breasts and the possibility of breast cancer. And they removed her appendix, just in case she might have appendicitis and not be able to express it. Here is her parents' blog site explaining their side of the story.

Are you horrified yet? I am. I wrote a post not long ago about mad scientists. I'd have to put those doctors on that list. Sure, little Ashley will be easier to care for and incorporate into the parents' busy lives, and that might have some benefit to the girl, but what if some miracle treatment is discovered in the next few years to help Ashley develop more advanced mental or physical ability? Stem cell therapy, for instance. What then? Will their little Peter Pan curse them for trapping her adult mind in a 9-year-old's physique? Will she resent them for sterilizing her, eugenics-style? And what sort of diabolical precedent does this set for other handicapped children?

Or do you sympathize with the parents and their belief that their "pillow angel" is better cared for if she remains in a childlike form?

I think I'll take a little extra time today to cuddle with my kids when I get home.

"Come with me, where dreams are born, and time is never planned. Just think of happy things, and your heart will fly on wings, forever, in Never Never Land."

UPDATE (1/11/07): Perhaps the greatest critique of this blog post, and other blogs, on this subject by supporters of Ashley's parents boils down to "You aren't in their situation, so how could you possibly understand? Thus you should support the parents." Well, it seems plenty of disabled people, their parents, and feminists who HAVE been in that situation support my view that "the Ashley Treatment" is inhumane and that the doctors who did the surgeries should be strung up for ethics violations. See this article:
http://www.cnn.com/2007/HEALTH/01/11/ashley.outcry/index.html

UPDATE (5/8/07): The "Ashley Treatment" was illegal according to Washington law. See my recent post: http://angrylabrat.blogspot.com/2007/05/ashley-treatment-was-illegal.html.

37 comments:

Maggie said...

Horrified is fitting. Appalled, disgusted, also words that come to mind. I can empathize with the parents on a certain level, but only a very thin one.

Sniper One said...

This isn’t just being severely retarded. Frankly, if left on the floor this girl is a door stop. (Cruel, but true) She’s immobile, and can’t do anything for herself, including swallow. Under normal circumstances, she would be dead without a level of medical care (feeding tube).

Keeping her small has advantages towards her care. Fewer chances for bedsores, no cleaning issues under her breasts, no “female issues” because her plumbing has been removed.

I am not saying I would do the same thing, however there are medical reasons for what they have done.

I wouldn’t go as far as to call it child abuse. However it does seem to be taking medical care too far.

Ben & Bennie said...

Well Lab Rat, I've accepted your challenge to read your opinion and I will respond accordingly. You are obviously very misinformed in regards to the complexity of the situation Ashley's parents are and will be facing.

As I mentioned I have a little boy with multiple disabilities. I know what daily life is like for those folks. For people outside the home this is the only time they peek into our world. It is usually brief and without a complete picture of the family.

First, for someone to suggest Ashley's parents are doing this solely for convenience is ludicrous. Even more ludicrous si saying they don't deserve to have Ashley to begin with or that they do not love her.

Next in regards to your accusation that they are sterilizing their child for the protection against rape or some other nonsense.

One of the girls in my son's class has had severe seizure activity since birth. In their research and discovery, it is quite common for females with disabilities to begin having their menstral cycles early. This was Ashley's case - she was beginning to experience puberty changes at the age of six. Once the cycles begin there is no turning back the clock. Not only are the mentral periods more painful and longer than those of a normal child but they trigger very intense clusters of seizure activity which are nearly impossible to control even with medication. At the moment my friend's child is facing this very thing. Her seizures are coming in clusters one week of each month now - she is nine. This child has already broken an arm last summer and more recently a leg at school during particularly bad seizures.

In regards to the removal of the breat buds. Again the comfort of the child is more at stake than some therapist groping the girl one day. Just like my son Ashley spends lots of time in stationary equipment like standers that facilitate bone & muscle growth. These devices are uncomfortable to begin with. Should Ashley develope breasts the size of those that are genetically inherited, it could be detrimental to her health. My son typically is treated for rashes that occurr in sweat areas, near glands, or by urine in his groin.

So if you care to continue your misinformed and uneducated argument then why don't you come on over to our blog and read a little about real life with an exceptional child (http://benandbenniewaddell.blogspot.com).

One last thing. I'm going to make an educated guess that you aren't married nor do you have children of your own.

baby221 said...

ben & bennie --

Just wanted to say that it's in the newpaper article that the parents removed her uterus for reasons including the inability to become impregnated by a potential rapist. That much isn't a false accusation.

meno said...

I have a hard time criticizing parents of a disabled child who are willing and happy to love and take care of her.

I don't know the right answers, but i am willing to trust that they think they were doing the best they could for her.

Ben & Bennie said...

baby221 said...

ben & bennie --

Just wanted to say that it's in the newpaper article that the parents removed her uterus for reasons including the inability to become impregnated by a potential rapist. That much isn't a false accusation.


You need to read my post a bit more closely. I've read all of the father's explanation. Were I the writer I would have chosen to explain things differently or perhaps leave some things out that aren't necessity to justify the treatment.

Here is my point: have you even visited my blog to read about our struggles in raising an exceptional child? Have you read ANY blogs or even KNOW OF a family that is facing a similar lot in life? I sincerely doubt it.

Most of you have heard the media's take on this situation and think Ashley's parents are doing this for the sake of "convenience." that is exactly what CNN, The Tribune, and other news outlets want you to BELIEVE.

I have a special needs son. He has exhibited far more intelligence than some of his peers and therefore may accomplish more than Ashley and others like her in his life. Would I have taken such drastic measures knowing what I know about Ben? No.

One of Ben's nurses cannot physically pick up my son. He is only seven and I have to take time out of my work to place him in his wheelchair. Later in the day I have to move him to various other places in our home to accommodate his needs.

I've also seen the teachers in Ben's classroom struggle to do the same.

Again I say that those that are chastising this family for their choice are not qualified to make a judgment of The Ashley Treatment unless they have made ANY attempt to walk the journey of her family's.

Maggie said...

Wow, I'm glad I read these comments. Its wonderful to be given the opportunity to learn so much from every angle of a problem and has prompted me to consider this more deeply. Thank you all.

Anonymous said...

You write "what sort of diabolical precedent does this set for other handicapped children?". Here's what: Ashely and her family do not owe it to the world to make sure that the treatment is not possibly misused by parents/doctors. By your logic, if I misuse e-mail and use it to scam people, then the inventors of e-mail are really responsible because they set a technological precedent making my miuse possible.

Also your statement "what if some miracle treatment is discovered in the next few years to help Ashley develop more advanced mental or physical ability?" I am not sure how closely you follow medical literature - but I am thinking that the 40 doctors who approved the procedure know more about the reality of "miracle cures" than you.

holly said...

when i heard about this case a little over a year ago i cried and i was severly angry.... my cousin is just like ashley and unlike ashley my aunt and uncle chose to raise thier daughter as god gave them to her... they didn't opted for uneccisary surgery to benifit their own personal needs and take away one of the only rights my cousin was still endown with that to grow and develop.... now people say they had reason ... and to this i will agree but none for thier daughters real benifit.... the breast tissue removal all together their is no real justification just like all women she has the possibility of breast cancer and can be check by a physician..... and as for her "not being taken advantage of" ... their is only one way to stop abuse and that is to closly monitor the facility and the people around her... a sick person will violate her either way developed or not ... so as for that it is bull... also the whole thing about her needing to be smaller for moving her and what not ... obviously this was not very well looked into my cousin who has this her body though it developed like everyother women it is greatly smaller than it would have been if she was "Normal" .... also all these hormon treatments have extreamly high risk factores aswell including blood clots... so really i have to ask if they are so worried about not being able to dectect somthing as minor as cramps or maybe miss breast cancer one a minor issue the other a rare one... why are they soo willing to lace thier child with uneccisary hormone treatments with far harder to dectect and grave concenquences?? my honest opinion they are selfsish to do this.... i do not hate them.... i just feel sorry for her....

pardon my horrid spelling.

holly said...

when i heard about this case a little over a year ago i cried and i was severly angry.... my cousin is just like ashley and unlike ashley my aunt and uncle chose to raise thier daughter as god gave them to her... they didn't opted for uneccisary surgery to benifit their own personal needs and take away one of the only rights my cousin was still endown with that to grow and develop.... now people say they had reason ... and to this i will agree but none for thier daughters real benifit.... the breast tissue removal all together their is no real justification just like all women she has the possibility of breast cancer and can be check by a physician..... and as for her "not being taken advantage of" ... their is only one way to stop abuse and that is to closly monitor the facility and the people around her... a sick person will violate her either way developed or not ... so as for that it is bull... also the whole thing about her needing to be smaller for moving her and what not ... obviously this was not very well looked into my cousin who has this her body though it developed like everyother women it is greatly smaller than it would have been if she was "Normal" .... also all these hormon treatments have extreamly high risk factores aswell including blood clots... so really i have to ask if they are so worried about not being able to dectect somthing as minor as cramps or maybe miss breast cancer one a minor issue the other a rare one... why are they soo willing to lace thier child with uneccisary hormone treatments with far harder to dectect and grave concenquences?? my honest opinion they are selfsish to do this.... i do not hate them.... i just feel sorry for her....

pardon my horrid spelling.

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