Saturday, January 06, 2007

The Ashley Treatment

By Alan Burkhart

Ashley in 1998
Ashley in 1998
America is plagued by irresponsible adults who seem either incapable or unwilling to care for their children. Not a day passes without a story of a young girl being molested by a family member, or an infant "forgotten" and left in the car on a hot sunny day.

On the last day of 2006, a 3 year-old boy was found wandering along I-465 in Indianapolis wearing only a diaper and t-shirt. His mother was asleep in their squalid apartment. When police reached the boy’s home, his mother was still asleep, and his sister, also quite young, was eating cold spaghetti off the floor.

Also this past December, an infant girl endured four of her toes being chewed off by a family pet while her parents slept on a mattress in the living room floor. The baby was in the floor by her parents when this happened. As of this writing, there is still some debate as to whether the poor kid's toes were gnawed off by the ferret or the pit bull terrier. Both were in the room with the child as the parents slept.

With all the abuse and neglect of children in this country, it is a rare pleasure to hear of someone who truly goes above and beyond the call to care for a child. Such is the case of "Ashley X" (her parents are attempting to remain anonymous).

Ashley was born with static encephalopathy, and has no use of her arms and legs. She can't hold her head up on her own. She cannot eat normally and requires a feeding tube. Ashley can't even roll over in bed by herself. And Ashley's mind has not and will never develop beyond that of a newborn. She will remain in a newborn's tiny world all of her life.

Ashley’s parents were determined to care for their daughter at home rather than send her off to an institution. As Ashley grew, the physical burden of moving her around their home and transporting her from place to place grew as well. Still, her parents continued to care for their daughter.

At age six, Ashley began showing signs of an early puberty. This caused Ashley’s parents to seriously consider what the future might hold for her as she grew into an adult in the physical sense, but with none of an adult’s mental capabilities. How would someone with the mind of a newborn deal with the pain of menstrual cramps? With both of Ashley’s parents being fairly tall – her father is 6’ 1” and her mother 5’ 9” – how much more difficult would it be to move her as she reached adulthood? To adjust her position (she can’t move by herself) in bed or in her chair? To include her in family activities? To bathe her?

Equally distressing to her parents was the prospect of a young, attractive and fertile woman with no ability to speak for herself, much less defend herself should she be attacked. Abuse of the disabled is unfortunately yet another perversion that has increased in frequency in America over the years.

Ashley’s mother came upon the idea of further accelerating her early puberty to minimize her adult height and weight. The family discussed their options with Dr. Daniel F. Gunther, Associate Professor of Pediatrics in Endocrinology at Seattle Children’s Hospital. It was here that they learned of a high-dose estrogen therapy that could lessen Ashley’s adult height and weight by a significant amount with no long-term side effects.

As the discussions expanded to deal with the totality of Ashley’s situation, a strategy was developed that would employ time-tested and safe procedures to prevent Ashley from developing into an adult. In effect, she would remain a child all of her life.

Because of the nature of the procedure and the condition of the patient, it was first necessary to gain the approval of the ethics committee of Seattle Children’s Hospital. On May Fifth of 2004, the family, aided by Doctor Gunther, presented their case to a panel of forty medical professionals. The procedure was approved, and surgery followed in July.

What has become known as “The Ashley Treatment” included a hysterectomy, appendectomy, and removal of Ashley’s breast buds. The surgery went smoothly and there have been no complications. This was followed by the high-dose estrogen therapy to control her growth, which lasted two and half years and ended recently.

The treatment has been successful. It was estimated that without treatment Ashley would have reached an adult height of 5’ 6” and weighed approximately 125 pounds. As a result of the estrogen, her growth topped out at 4’ 5” and 65 pounds.

In October of 2006, Ashley’s doctors published an article on the use of estrogen to inhibit physical growth in developmentally challenged children. The article brought national attention to Ashley and her family, and the predictable storm of harsh judgment from those who had no real knowledge of the situation outside of what was seen in the media. Thankfully, there has also been a goodly amount of positive response.

Ashley’s family was overwhelmed by interview requests, phone calls and e-mails. As a result, on December 19, 2006 the family posted a huge and comprehensive blog post to explain their reasoning and dispel the myth that Ashley had been “mutilated” for her parents’ convenience. I for one am in complete agreement with her parents. They have done a great service for their daughter by giving her a body far more suitable to her mental capabilities. Ashley will spend her life with the mind of a small child. Now she is guaranteed the body of a child as well.

With her small stature, her parents will be able to care for her as they grow older and their own physical strength begins to wane. They will be able to better include her in family activities because transporting her will be far easier. Ashley’s low body weight will make her less prone to bed sores, and the lack of breasts will allow her much more comfort while lying down. That’s important, since she is incapable of sitting or standing on her own. Ashley will never endure menstrual cramps. She will never be a victim of uterine cancer or breast cancer. She will never suffer an attack of appendicitis.

With all of the challenges facing Ashley and her family, they have somehow managed to create the possibility of Ashley having as near to a normal life as is possible for someone with her condition. She will live her life with her family, rather than being in the company of strangers in an institution. She will travel, and will experience the world in whatever capacity she is able.

In a world where monsters like Michael Schiavo are free to murder for convenience, where child abuse and neglect are rampant and abortion is considered a viable option to condom use, these loving people have sought the higher ground. Mr. and Mrs. X, I salute you.
(Images used with permission)

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14 comments:

Anonymous said...

Why do people critize when they have not walked in these parent's shoes? The parents are taking care of their child, making decisions for her that she can't make for herself. It is no different from taking care of a parent who has dementia. Adults with deteriorating brains end up under guardianship, They end up residing in skilled nursing facilities because the family can't handle the everyday care-- particulary the lifting! (I speak from experience). Ashley's parents
are making very hard decisions, and they should be commended for coming up with a solution which will keep Ashley with her family as long as possible.

Susan said...

Nonsense. If "Ashley" were a "normal" child and the parents decided to have her surgically mutilated, the parents would be thrown in prison where they rightly belong.

These people are totally unfit to raise kids. This is child abuse of the most outrageous kind.

The "doctors" involved in this case should have their licenses revoked.

Alan said...

Susan (posting here) has quite accidentally re-enforced my point. Dear Susan... if Ashley was "normal" then none of these actions would have been needed.

It was precisely because of her ABNORMAL condition that her parents took the actions they did. Parents have both the right and the obligation to speak for and act on behalf of their children. Ashley's parents should be applauded for their bravery and their dedication to their child.

Best
Alan

DiverMike said...

I read your article on Ashley on NewsByUs and I must say thank you! All I heard was what our media wanted to tell us. Thank you Alan for changing my view of these great parents.

DiverMike said...

I read your article on Ashley on NewsByUs and I must say thank you! All I heard was what our media wanted to tell us and with the information overload we have today was hard to follow up. Thank you Alan for changing my view of these great parents and God Speed to them.

G Silver said...

Alan

At what point is change for convenience good? You said that the parents did not do this change for convenience. But you said;
“Ashley’s parents were determined to care for their daughter at home rather than send her off to an institution. As Ashley grew, the physical burden of moving her around their home and transporting her from place to place grew as well. Still, her parents continued to care for their daughter. (convenience?)

One of the Definitions of convenience is 1 “Freedom from Discomfort”, 2 “something (as an appliance, device, or service) conducive to comfort or ease”
I don’t think you can say that Ashley requested these change be made to her. I do believe that they were made for the parent’s convenience. I do believe that many parents have cared for their Disable Children with out this convenience. If Ashley would have been left alone to grow and mature. How long would that inconvenience lasted for Ashley. From what I understand persons with severe static encephalopathy, motor problems often lead to medical complications, including more frequent and serious infections, severe breathing problems, feeding intolerance, and skin breakdown. These medical complication lead to frequent hospitalizations and a shortened life expectancy. I do believe that Ashley falls in to this category.
One other thing, I believe that they made change for Ashley out of fear, what if?

“Equally distressing to her parents was the prospect of a young, attractive and fertile woman with no ability to speak for herself, much less defend herself should she be attacked. Abuse of the disabled is unfortunately yet another perversion that has increased”

God knows that we live in a world that is motivated by fear. All you need to do is watch the News. At what point does change for convenience or fear become the motivating factor? What kind of society we are becoming? I’m just asking the Questions,I'm not sitting in judgment of any one. Just makes me think of an old saying “The road to Hell is paved with good intensions”

Alan said...

TO: g silver...
Visit the blog put together by Ashley's parents at:
http://ashleytreatment.spaces.live.com/

Read the entire front page (it's pretty long) and you'll get a better understanding of what they've done and why they've done it.

In a nutshell, their actions will allow them to properly care for Ashley for years to come, while sparing her many discomforts and hazards to her health and well-being. I can find no fault in that.

I've also received a private e-mail from a personal friend of Ashley's parents, who has assured me that my take on the situation is correct.

I'm about 2 minutes from the mattress at the moment - but I'll post up the e-mail at the end of the original post in a day or two.

Best
Alan

Anonymous said...

Having read many blogs and news articles, commentaries from all around the planet. I feel for both family and little girl, such a really tough case ...I just have a point and question for the physicans, they must remember that they have a duty to do no harm and was these procedures medical necessary that a question? It must be asked. Since the parents asked for it and not physicans. Lastly, lets look at this case and judge not now but in 5, 10 or 20 years from now. Take what we learn about the Ashley case good or bad.

Angry Lab Rat said...

I simply don't agree with the parents in this case. There are many, many things they could do to eleviate pain, check up on health, get help in handling their child as she grows, without going to such horrible extremes. While I agree that it is a very tough world for parents of severly disabled children, there are innumerable cases of children much like Ashley who were raised just fine, with minimal discomfort, and full involvement with the family, who were not mutilated in this manner.

What the parents and hospital did was not only illegal (according to Washington law), but constitutes child abuse.

See my blog post for more:
http://angrylabrat.blogspot.com/2007/05/ashley-treatment-was-illegal.html.

Anonymous said...

I assume that when Ashley's parents see themselves becoming too old and incapacitated to care for even an abbreviated version of Ashley, out of the same lovingkindness they will have their daughter join them in collective suicide, or merely euthanize her while they are still capable of carrying out this task. . . oops, wouldn't actyually be suicide or euthanasia since the intent would be to never put Ashley at risk or discomfort associated with other caregivers. Death would merely be a fortuitious "side benefit."

suresh said...

It's a great thing that her parents have done. They understood their child very well. If they neglect the same, it would have been a ridiculous thing they ever made. Its an decision they made. It gave a superb solution for the parents and children who are in depression by the same problem.

Suresh
India

Anonymous said...

Personally I think the parents should have been searching for a cure while allowing their daughter to grow up. What happens if a cure is found and their daughter is free of her condition. She will then be in a worse situation then she is in now, unless the doctors have a way to make her grow again and start the normal female processes.

Anonymous said...

Ashley has never received an opportunity to use an alternate method of communication, she has the equivalent of severe cerebral palsy and may very well have a fully developed mind but a body that can not cooperate enough to allow for speech or purposeful movement. This is the worst form of abuse for this child because she could know exactly what is going on and be unable to protest. This was not done for the sake of the child, it was done for the sake of her parents.

Alan said...

Her mind is that of an infant. She will never progress to a point that she can understand or engage in anything beyond recognizing "mommy and daddy." Her parents' solution was unprecedented, but it was the right thing to do.