Posted by Helen on: 01.17.2007 /
According to the TIME Magazine article Pillow Angel Ethics
Ashley is a brain-damaged girl whose parents feared that as she got bigger, it would be much harder to care for her; so they set out to keep her small. Through high-dose estrogen treatment over the past two years, her growth plates were closed and her prospective height reduced by about 13 inches, to 4′5″. “Ashley’s smaller and lighter size,” her parents write on their blog “makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.” They stress that the treatment’s goal was “to improve our daughter’s quality of life and not to convenience her caregivers.”
Are you fine with this? Is it even any of our business?
Comment by: benjamin ady
1Yes. Not really. Can I just say that among all my interactions with doctors and the medical system in this country, those with the doctors and staff at Seattle Children’s have been among the most brilliant. I trust them.
Comment by: Eliza
2Clearly, it bothers people who hear about the case. It seems odd to use surgery and hormones to keep a person from maturing physically, like perpetual childhood is being forced upon the person, and adulthood denied. (Might I say that it seems like ‘playing God’?)
But for those who know her best, and have reviewed her situation in detail, it seemed like a better solution to her life, liberty, and happiness for the long-term. Her developmental age, not just mentally but also in motor function, is 3 months. She relies on people picking her up to move from bed to stroller (the paired stroller arrangement they’ve set up to allow her to be moved around reclining, which she seems to prefer to sitting up), bed to bath, from house to the outside world. She acts like she dislikes being in a wheelchair. She is already 65 lbs - near the limit of the ability of her parents (and grandparents), her full-time caretakers, to move her. While the parents stress that this was for her benefit, not theirs, the two are intertwined. They do seem to want what’s best for her, as far as they can determine from knowing her since birth and caring for her every day, day after day.
Adults who are immobile do end up spending alot of time stuck in one place - in bed. It does take a Hoyer lift (which one of my patients called demeaning, yet crucial to allow her to get out of bed) or full assistance by 2 other adults to move the person. And they’re right, that larger weight means more pressure on the back and buttocks, greater risk for skin breakdown and chronic decubitus ulcers. Ashley will be at lower risk for those to occur, than she would have been at full adult size.
Combine physical immobility with cognitive impairment, with the person unable to ask for what they’d like to get out and see, and severely disabled people often do end up looking at the same 4 walls for much of the time. Ashley’s family talks about how she seems to delight in being with her family, and how she goes out on all of the family’s trips around town, to places that kids like to go. It’s hard for me to fault them for trying to make it work to keep taking her along, rather than becoming more likely to be left behind.
Comment by: Eliza
3To clarify: that’s “left behind” in the secular sense. ;-)
Comment by: Paul
4A better Q for me is if I didn’t like it what am I prepared to do about it [well clearly too late in this case] but maybe I should set up a charity/fund etc for people with similar conditions or fine one that exists already and support it - it costs emotionally, financially, qualitively etc to look after both parents/family and child/children in these situations so unless i’m getting off my butt and actively doing something that will give these people more options for quality of life than i will keep my opinon quiet in this situ…
Comment by: Karen
5I think unless there’s evidence of clear-cut abuse (which could be determined by medical expertise), it’s not up to me or society in general to criticize decisions made by people in these kinds of situations. It’s all-too-easy to second guess, but the truth is none of us can anticipate what we’d do unless we were in these parents’ shoes.
The other point is that they probably could have her justifiably institutionalized (Eliza, correct me if I’m wrong). It seems they’ve made quite a personal sacrifice to keep her in the family and care for her at home. Which is certainly to be admired.
Comment by: julie marie
6It seems to me these parents are trying to look the brutal truth of their daughters situation and prospects and make the best decision they can for themselves, as caretakers, their family, and their child.
Families really are on their own in our society when it comes to dealing with physical/mental/behavioral problems with their loved ones. These sitations don’t seem to have “good” answers and happy endings; all we can do is learn as much as we can about prospects and options and try our best.
Comment by: Doreen
7It’s not my direct biz, and I’ll admit my first reaction when I heard about it was not positive. After hearing & reading more about it, I am all for doing what will make the child most comfortable.
I don’t think I’m automagically in favor of doing things to make it easier on others if the “things” don’t bring additional comfort or safety to the child. For example, having a hysterectomy to prevent pain & bleeding seems justified. Having it to prevent pregnancy from rape is just stupid.
Comment by: Helen
8Karen, I definitely admire the parents for choosing to keep Ashley at home with them instead of institutionalizing her. It seems to me that it’s very unlikely she would have been cared for better in an institution.
Comment by: Rachel
9After reading the parents’ blog, which gives an extremely detailed and articulate explanation of their decision, I think they have definitely acted in the best interest of their child. I can’t even imagine the challenges they face and I admire their courage and devotion.
Comment by: Rachel
10Doreen, I was similarly shocked by that statement in the news article. But then after reading the parents’ blog, I saw that they stated it much differently.
Times article: …doctors removed her uterus to prevent potential discomfort from menstrual cramps or pregnancy in the event of rape…
Parents’ blog: Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused.
It seems clear to me that the Times article is stating the issue in a more provocative and incendiary way.
Comment by: Mike Clawson
11My initial gut reaction was negative, but as I read more about the situation, I can’t see as I have any right to judge. These situations are so incredibly difficult and I applaud the parents for dedicating so much of their lives to caring for a child like this. They are truly caring for “the least of these”.
Comment by: Pam Hogeweide
12Like many Americans my first reaction was shock and judgement.
Now I have admiration for her parents and healthcare providers who are bravely blazing a controversial trail.
Comment by: benjamin ady
13I wonder why so many have this initial reaction of shock and judgement? I didn’t experience that at all, and now I’m wondering what the hell is wrong with me?
Comment by: benjamin ady
14Helen, sorry if I wasn’t supposed to say H***.
Comment by: Helen
15Benjamin, I don’t mind what words you use as long as strong language isn’t directed at someone else here :)
Comment by: Rachel
16Ben, I think that some of our initial shock and judgment reaction may have been a response to media reporting. I first learned of the story from a provocatively worded headline in my local paper, which presented the situation as shocking and controversial. Perhaps instead of questioning yourself, you should complement yourself on resisting sensational reporting and not being reactionary.
Comment by: benjamin ady
17oh. ok. I see what it is. It’s the media deprived box that I live in. I didn’t see this story at all until I read about it here. And my introduction to it was with Helen’s provocative questions, which shaped my reading of the link she posted. so maybe instead of complementing myself, I should complement CatE.
I don’t really complement myself for my resistance to mainstream media in general. I just sort of accept that about myself. I’ve been criticized for it, and now it has been suggested I complement myself for it. But it’s just part of who I am at this time. I generally don’t like it, so I generally avoid it.
Comment by: Seren
18“Having it to prevent pregnancy from rape is just stupid.”
One of the saddest things about working in disability services is coming to terms with just how common the abuse of women with disabilities is. Quite honestly, from my experience (very small sample, i realise, not statistically significant, but personally quite overwhelming) a woman with a disability is more likely to have been raped than not.
Comment by: Cyndi
19quote (I definitely admire the parents for choosing to keep Ashley at home with them instead of institutionalizing her.)
I can not even thinkof that ever being a subject in my home, as a mother of a child just like Ashley.. What a blessing to have some hope. I have had excactly the same concerns, but thought was as far as it was. My husband and family have all remarked on this subject prior to hearing this story. What a relief to know that there is actually a way to help our little angels be in the best health and care. About 7 months ago a cousin of mine had told me that her best friends daughter had just passed at 19 yrs old, she was in the same delima. She had no muscle tone an had spent most her life in a laying position. Her heart imbeded in to her lungs which took her life. It was due to her adult size. HOW SCARY!!! Here is my story..
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 all your Angels. For every moment is precious moments! For those who do not know, do not judge.
Cyndi-N.C.
Comment by: Eliza
20Cyndi, thank you for telling us about Billie-ann - she sounds like a source of joy for you, and you for her! Do you think you might talk with her doctors at UNC-Chapel Hill about Ashley’s treatment for your daughter?
Comment by: Helen
21Thanks for your comments, Cyndi. I can understand it being upsetting when other people who have never been the parent of a child like Ashley or Billie-ann judge you or Ashley’s parents for the choices you make.
Comment by: Cyndi
22She is 100% a joy! I have seen more than enough comments out there refering to Terri Schivo, and this is such a different situation. Terri was completly brain dead. Doctors were keeping her alive by life support. When I first heard of that case, the first thing that caught my attention was the pulling of the feeding tube. My heart sunk before reading more into the case. I have seen one person put…
(”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.”)
This is such a crock. My daughters only sorce of life is through her g-tube, and she is not better off w/o being here. My daughter has had so many testings and everything has been normal, MRI, CT, A full break down of Genetics. We do not know why she is like she is, but as long as she is happy Who Cares! She has the greatest daddy in the world, and she is his girl. I have also seen comments on calling Ashley a pillow angel & how that puts her into a non-human catigory, Whatever! I love to see parents like Ashley’s feel the same way we do. There are so many children that are neglected and abanded because the parents don’t know how to deal with them. Ashleys parents, just like us, know the true meaning of unconditional love. My little angel has been such a blessing. Though we have had many worries along the way, with all the testings and such.. If it were you would you love your own child any different, Of course not. I have 3 other children and don’t love them any different. I have had so many people approach us and say “it must be hard” “i give you alot of credit because I don’t know how I could handle it”. No one knows how they would until it happens. I did not know the first thing about disabilities, you learn. She is my daughter! Like I said, she is so happy & free of any worries and that is all that matters. I know there are alot of different cases were suffering is a issue, but we don’t have that. It seems like Ashley doesn’t either.
As far as what they did, I have seriously been thinking hard. I am so back and forth because I would be worried that my girl could be the one who would have adverse reactions. Rare but everything has risks. I just can’t bare the thought of complications. Gentically she should be smaller because all the females in my family are small. She is 30lbs at 4.5 yrs. old. I would not opt to do the other surgeries, because why not wait till puberty. What if she didn’t have problems with periods and such? So many people don’t. Anyway, I think I have wore evrybodys ears out by now. It is just nice to be able to express some of my thought being in a situation alot like Ashleys family.
Cyndi
Comment by: SezMe
23Here, this’ll stir the pot. The kindest treatment for Ashley is to kill her.
Yeah, I could have said “euthanize” or some other namby-pamby phrase. But let’s be straightforward and blunt.
It is only in the last decade or two that Ashley would even be alive for more than a few months thanks to medical science. So it is our current technology that is keeping her alive, not god’s love.
Let her go - it is the only humane thing to do.
Comment by: Helen
24SezMe, this is what I don’t understand about your comments. If a person is disabled but not unhappy, and their caregivers want to look after them, and the person is responsive in the same way a baby is, why would it be a kindness to starve that person to death?
If it’s because the money spent on keeping that one person alive could keep several other people alive instead - I can understand that argument and I think it’s a very difficult one created by our advances in medical science (and how we price it and pay for it). Although I don’t think you can insist that parents use their money to keep strangers alive instead of their own child.
I don’t see what would be kind about starving someone to death just because they have the mental age of a baby (and corresponding other physical limitations).
Comment by: Cyndi
25SICKOOOO… actually if anything like my daughter, there are not alot of extra expenses compared to your typical sick child. For instance… I know several people that have children with asmatic bronchitis. You have a nebuliter, & all the expensive meds to go along. Should these children die? What about just common allergies, prec. meds are $100 a month. Pricy? my daughter is on a feeding tube, but her only expenses is the pediasure. HMMMM!!! 4 cans a day plus juices and water. This does not touch your above criteria. What about Autism? Your elderly? and when I say elderly, I mean 50’s +, because this is when routine care for many issues begin. What about cancer patients, those are the suffering folks. Ashleys parents did routine procedures that many “typical” people incounter on a day to day basis. I am sure the expense to have breast buds removed cost less than boob jobs…. What they did is not life support, just a choice. She would not have died if they did not do this. But breast cancer or colon or prostate cancer patients could w/o your very expensie treatments. Mri’s Ct scan and Gentics that have been encountered are normal part of life. I myself have had 3 MRI’s now because of a vechicle accident, my daughter has had 2. So you eat throgh your mouth, our children a tube. Big deal! they are NOT Terri. They are with out a doubt here and living because of GOD, anyone to belive otherwise needs to evaluate who and what GOD is. Just beacause she is eating through a tube does not mean she should be murdered, this would be a SIN. I could see if a person is absolutely in pain and suffering and has NO quality of life to even have a debate over it. Then the topic would be crulity. That is far from what the situation is. Look at her pictures, those speak for themselfs. Get a life! go to another forem with a better debate.
Comment by: SezMe
26Helen questioned:
You’re assuming facts not in evidence. According to the article she is “severely disabled” and as such, I suggest we have no way of knowing if she is happy or not. The article does not say she is “responsive in the same way a baby is” so we don’t know that either.
I did not say starve her to death - that would be cruel. There are other, quicker, painless approaches.
Look, you do raise some slippery slope type of arguments and I certainly don’t have all the answers. But it seems to me there are cases such as this one where we are so far away from the slope that those concerns don’t come into play.
What about the fact that they have chemically and surgically mutilated this person. Again, you may not like the word “mutilated”, but it is precisely correct. Are you OK with that? For example, they cut off her breasts because “she will not breast feed”. Huh? By that logic they should cut off her legs because she is not going to use them either.
The parents are being selfish and thinking of themselves, not Ashley. They might be killed in an auto accident tomorrow. No matter, they may well die or become incapacitated themselves. Then where is Ashley? In some state care facility, treated like a lump of meat, at risk of being raped, and nobody around who gives a damn anymore. And now we taxpayers ARE paying to keep her alive to the detriment of other health services.
Comment by: SezMe
27Cyndi whined:
Exquisite display of Christian love and maturity.
Exquisite display of illogic. You’re comparing a “severly retarded” person with a “typical sick child” or kids that have “asmatic bronchitis” or “common allergies”.
I would have thought you would have learned from what an idiot Dr. Frist (yes, a medical doctor) made of himself by doing a diagnosis via pictures. Yet you (not an MD, I presume) are apparently able to assess quality of life from a few pictures “themselfs”?
There’s nothing wrong with this debate but another forem [sic] might indeed provide me with a better debator. I’ll go check themselfs out right now.
Comment by: Cyndi
28a better debator? this is coming straight out of the mouth of a mother with a child alot like Ashley. And yes the parents do speak of her happiness and her responsiveness.
“What about the fact that they have chemically and surgically mutilated this person”
I do agree with that! I can not even imagine why they would not wait to see if indeed there was an issue with breast or periods before taking extreme measures. I just know that by the way she is described by her parents, she seems alot like my own daughter. I know my daughter is very responsive and happy. I am not a MD as you presume.. I am living the life. Is the debate over her life or the procedures?
Comment by: Helen
29Cyndi I value your perspective as someone actually raising a child like Ashley. I realize this is very personal and emotional for you: you’re welcome to post here but please don’t call other commenters here names even if you find their opinions offensive.
Comment by: Helen
30SezMe wrote:
I thought I read somewhere that Ashley was like a baby - and babies are quite responsive and show their emotions. Maybe I am mistaken and didn’t read that.
I suppose - but then I think you must be advocating something illegal.
All parents are somewhat selfish, I think.
But you raise a good point about, what if something happens to the parents? I hope they have some sort of contingency plan to make sure Ashley would be kindly looked after if something ever happens which means they are no longer be able to take care of her.
Comment by: SezMe
31Helen, there may be more information on Ashley’s condition that was not in that single link and you may well be right that there is some basis for judging her emotional state. So you get to say “neener, neener” to me for not taking my own advice to not assume facts not in evidence.
Yes, I am advocating something illegal. But legality and morality are two different issues, an issue probably best left to a different thread.
Comment by: SezMe
32I asked:
and Cyndi replied:
Wow! Just Wow! Helen, above thread, was concerned about slippery slopes but approval of mutilation has got to be the mother of all slippery slopes. There is only a minor difference between Ashley’s treatment and the practice of female genital mutilation currently undergone by millions of young women each year. This is one of the cruelist practices that I know of.
No, Cyndi, I don’t think you are a good debator on this topic, for the very reason of your emotional involvement. Just so you know, I too am a lousy debator on topics in which I have a high level of emotional invovlement. So is everyone else, I suspect. While your perspective can yield valuable insight into some personal aspects of the problem, cooler, more detached heads must prevail when broader political and ethical considerations are on the table.
Finally, “alot” is not a word. You mean “a lot”.