A fascinating story has come to light through the blog of some Seattle-area parents. Their daughter, Ashley, suffers from a brain condition called static encephalopathy, which keeps her from mentally developing beyond the level of a three-month-old. However, she’s nine years old, and her body grew normally - until they decided to stop it.
Since Ashley has to be cared for as a baby, and participates in family life the way a baby would, it would be very difficult for the family to take care of her if she grew into an adult. They would need to hire outside caretakers to lift her, and it would be much more difficult to keep her closely involved the way you’d have a baby with you at all times.
So, they decided to give her a combination of medical treatments that will fix her growth at her current size, give her a hysterectomy, and remove her breast buds. All of this is designed to increase her comfort and make it possible for the family to care for her in the way they always have - in other words, to keep her in a physically child-like state permanently.
Understandably, this has raised major ethical questions and a good deal of controversy. The procedures were done at Children’s Hospital in Seattle, whose ethics board ultimately approved the “Ashley Treatment.” Since Ashley is locked permanently in this baby-like state of mental development, she is exempt from a law that prohibits the sterilization of persons with mental retardation. Since she will never have the ability to decide whether to have a relationship, her parents sought to “desexualize” her for her own protection.
I think it’s a good idea to keep Ashley’s physical status as close to her mental status as possible, given the challenges that a full-grown yet baby-like person would face, including bed sores, the threat of rape from an outside caregiver, and an inability to be held by her parents. However, this is new territory, and it may encourage parents of children with less serious disabilities to consider similar procedures for their children.
Ultimately, you could imagine psychotically overprotective parents trying to “Peter Pan”-ize their kids so they never grow up. That’s clearly not what the Ashley Treatment is about, and no medical ethics board would approve it. However, it’s a difficult spectrum to navigate.
How serious must a child’s disabilities be in order to warrant permanent modification of their bodies? What if new treatments are discovered that fix the brain condition, leaving an adult with a child’s body? Doctors were emphatic that no treatment will be developed to treat Ashley’s condition, so again, that’s not an issue here, but could be in future cases. Ashley’s parents, who have remained anonymous, started their blog to tell other parents about the “Ashley Treatment,” the name they gave the combination of procedures.
What do you think?
Maybe if I had a child I would feel differently, but in my layman’s opinion Ashley’s body is unable to sustain life on its own (she can’t swallow). When this happens to elderly parkinson’s patients, doctor’s recommend to the family that they not install a feeding tube because then you force them to die of another, more difficult symptom of their disease (e.g., bed sores). I would prefer to let my loved one go when their body is unable to sustain life rather than prolonging the inevitable.
Heather-
I think this situation is less Terry Schiavo-like because Ashley was not injured, and did not become sick; she simply did not develop in certain ways, including the swallowing reaction (which many babies don’t develop at the normal time).
The viability argument doesn’t really apply when we’re talking about children, because virtually everything parents do could be considered “life support.”
It’s pretty clear that Ashley is able to participate in family life as a baby would; she’s not spending life strapped to a gurney with a heart monitor on, and keeping her out of that situation seems to be a major motive for the drastic medical treatments they gave her.
It’s pretty clear you’re not interested in discourse. Why blog about it at all?
Um, in what way did you try to discourse, Josh?
I’m perfectly interested in discussing the case; however, I thought it was important to point out some of the differences between this situation and others that have been in the news in recent years. If you disagree with me, feel free to say so, of course. I didn’t add as many IMHOs as I might usually do, but they are implied.
What a difficult and courageous step the parents here have made. I am interested in finding out what other parents with developmentally challenged children are saying.
I tire of theorizing , armchair critics who are informing themselves but doing nothing much positive. I hope everyone is at least equally investing in some personal risk to actually do something for someone else.
As a teacher of developmentally disabled children I have seen and worked with the “adult child”( in state asylums in the 70’s) Their life as such was not a pretty thing in any way shape or form.
I believe based on what I have seen and worked through that these parents and the doctors have made a great decision that will hopefully alleviate some of the terrible suffering this child would face and now will not.
The have done something. Something scary…but loving and great. I am sure any parents out there can begin to get this. Let us hear from parents.
I am a parent of two special needs children - my youngest - daughter - is 17 and is a lot like Ashley in terms of functioning at a level of a 3 month old. Thank goodness she is only 50 lbs. and we have not had to even think about doing something like this. Until you walk a mile in our shoes, you do not have the right to criticize what these parents have done - you have no idea of how much support they get in terms of looking after their daughter and trust me, they know what’s best for their daughter - I know my 17 year old daughter loves to be rocked and cradled and if she was 5 feet tall - that would be almost impossible to do. You do what is going to make your child happy and give them th best quality of life you can.
I myself am a mother to the most precious little angel in the world, Billie-ann. She is 4.5 yrs old, and is too, a lot like Ashley, except she can roll. She has been on a feeding tube for over 2 years now (her only supply of food-nutrition). She is your defination of pure delight. She has the most angelic smile Ever! I am certain she can comprehend more than she can express. For example, she loves to play Pat-A-Cake. I say roll it up, roll it up, and toss it in a pan, then throw her hands above her head. This makes her laugh (more like a grunt). She anticipates it coming every time. Though she does not see or know danger or fear, nor does she startle. She can grab at toys but loses grip fast. She loves to play with anything stringy haired. She has no dignoisis, though every test possible has been made. She goes to UNC-Chappel Hill. We drive 300 mile there because they are such a great team! My mother had e-mailed this story to me, and I am so glad she did. I know my Lil Angel will not progress anymore and this sounds like such a great way to be able to ALWAYS care for her & the same with her comfort & health. I have worried myself sick about her care when she is older. I am 110lbs & 5ft 2inches, and even her 30lbs is hard for me, being that she is dead weight. I don’t want to ever stop holding her and cuddling. I love to walk around with her & hold her tight. I love her more than life it self and am so blessed that we (her dad and I) have been chosen by god to have such a blessing in our lives. Her father & siblings & granparents feel the same. I would not change the way she is for the world. If only everybody could see happiness and love in the same way she does, it would be a blessed world. She has touched so many lives. God bless Ashley and her parents for bringing a new way to help our little angels. Good luck to all of you out there with your precious moments! For those who do not know, do not judge.
Cyndi N.C.
FYI I asked about this on CatE. I was interested to read what people thought.