Friday, January 05, 2007
Stunting growth - in whose best interest?
The first time I saw a picture of Ashley, I could understand why her parents call her their "pillow angel." Her beautiful smile is engaging; her sparkling eyes, unforgettable. In many ways, she reminded me of my four little girls. But Ashley can't walk or talk. She can't keep her head up, sit by herself, roll or change her sleeping position, or even hold a toy. Basically, she is a baby inside a 9-year-old's body. Doctors say she suffers from something called "static encephalopathy of unknown etiology," which means she had an insult to the brain of unknown origin or cause. She will never get better. And now she's become the focus of an international controversy.

Ashley has the needs of a baby and always will. At 65 pounds, her parents can still carry her around and involve her in family activities, giving her "needed comfort, closeness, security, and love," as they've written in their blog. But what would happen if she got bigger? That's what her parents worried about, and so after long discussions, Ashley's parents, in consultation with her doctors and ethicists at Seattle's Children's Hospital, decided to stunt her growth by giving her estrogen therapy. "As a result, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently," they write. In addition, a surgeon removed her breast buds and uterus so she won't develop breasts or menstruate. "Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a small, lighter body that is better suited to constant lying down and is easier to be moved around," her parents wrote, adding that since she looked like a girl, she'd be less of a target for sexual predators.

As you can imagine, this treatment has been very controversial. Art Caplan, an ethicist at the University of Pennsylvania, thinks what Ashley's parents have done is "morally wrong...permanently freezing a person into childhood as a solution is not the right answer." Caplan told me that Ashley has the right to grow up and not to be seen an "oddity" or a "freak." Although many comments on web sites are supportive of Ashley's parents, many have also been quite critical, some even saying the parents are practicing "eugenics." What do you think? What would you do if Ashley were your daughter?
As a respite counselor that cares for disabled children and adults in a temporary residential care facility, I feel that while what Ashley's parents did was not particularly desirable, it was best for Ashley. Taking care of someone as dependent as Ashley who is full grown is backbreaking work, and hired care is expensive and hard to find. Too many times I have seen aging parents who, unable to care for their children, are forced to put them in badly supervised group homes where they are treated poorly. It breaks my heart to hear my clients speak of not wanting to go back to their group homes because of the callous treatment they recieve, and frankly, I'm not surprised of it, as caring for a 250 pound person in a wheelchair (lack of exercise and medications often causes weight gain) is frusturating and tiring. For Ashley and her family, this was the best solution they could find to prevent this fate for her, and to be quite frank,with Ashley's cognitive delays she will not notice/care about her lack of growth like a person like you or me would. What she will notice is a lack of care and stimulation. My heart goes out to them and families like theirs.
Having worked with kids with disabilities for many years, I understand this family's dilemma. While I have always been a huge advocate for people with disabilities, I actually agree with this family. I have cared for many children like Ashley. Growth to full-size adulthood not only limits a normal day-to-day existence for these individuals, but it also puts a tremendous strain on the family, both physically and emotionally. Imagine that you are a average-sized woman, caring for an adult-sized child larger than you? It's hard. I think families in this situation should be free to make the choices that are right for their family and their situation.
I think what Ashley's parents did was right. Ashley does have a right to grow up, but Ashley has to be comfortable too.
If Ashley can't talk, it would be hard to find out what she wants, but if it was my child in the same condition, all I would do is try to make her life as happy and comfortable as possible. I would try to find out what she likes or loves and surround her with it. Whatever I could find to try to make her happy. I would tell them to get whatever happiness out of life that you can get and give it to the child too.

I know that sounds like pretty words and no solution, but I don't know the answer in this case, I'm not in their shoes, and I don't think the general public has the right to judge them.
Any person who has a medical background and has cared for a mentally handicapped person will tell you, that the course of action; that the parents of Ashley took were necessary to protect her. Also the quality of life for Ashley will be improved. The doctors have clearly described Ashley as a child who has the mental capability of a 3-month old baby. This is a condition, which according to her doctors will never improve. The decision to go forward with these invasive procedures along with estrogen therapy will help Ashley in the Long run. For example, having her uterus and breast buds removed will significantly decrease the chance of rape and eliminate the possibility of pregnancy. Also if Ashley was to mature into a women, she would gain significant amount of weight and because of the fact she either cannot or will not move (pillow angel), she would have suffered bedsores and foot problems etc. I personally believe that people who do not have an understanding of this mental condition have no authority or the right to decide how she should be cared for. This decision of course was not just Ashley's parents, the parents along with the doctors and the ethics committee deemed it appropriate. I beg everyone who has been critical towards the parents of Ashley to learn about this condition further rather than criticize parents whose lives are difficult enough already.
As a nurse I know that these patients can live a long life. I feel it is wrong to interfere with another persons body function, clearly it is to benefit the family only, not the patient. It should be illegal.
As a nurse who has cared for people with severe debilities, this family reached a very difficult decision that best suited their situation. No one has any right to pass any type of critical judgement on them. Those who do, however, should plan on offering this family to help care for Ashley.
I find it amazing that people who are not in the same position make judgements about people whose lives are completely unrelated. To judge a decision made by family and physicians is evidence of a self righteous, rigid person who is a self appointed judge of all. Such arrogance.
I dont think anyone has the right to play god. I think stunting her growth is cruel. They are doing it not for her (she knows no better poor girl). They are doing it to make it easier for them. I think it is awful. We are to grow, it is natures way. Why stop her menstrual cycle?. You don't want to change her. What kind of target can she be if she is always with family? What your doing is selfish - your pumping a child with a substance to prevent nature. She deserves better
I truly feel the parents have love and compassion for their child and they were thinking this was the best decision to make. Stunting the child's growth is far better than sticking her into an institution.
I commend Ashley's parents for doing everything possible to keep her in a loving, family environment. It is so easy for those of us not faced with the demands of caring for someone 24 hours a day in our home, with no hope for improvement to criticize others. I have only seen a glimpse of this with a few aging, ill family members.
Our attititude toward illness, aging and dying is sadly lacking in scope as far as the reality of life, death and quality of life. As the human population continues to grow with no where to go except this planet, we may find it necessary to change our outdated attitudes.
Thank you for requesting comments,
Laurel E. and James D. Perry
I think that if Ashley's disability was less severe, I would feel very differently. But in this case, I think it is for the best. Aside from whatever pain she had with the surgery, Ashley will never know the difference. She will experience no loss or suffering of any kind from this. Whereas if she grew too large to be easily cared for, too large to be held or moved easily, it's likely that she *would* experience suffering, loss, and less quality of life.
None of us has the right to judge these parents. As a parent of a disabled child I commend them for seeking whatever will enable them to keep their child safe at home with a loving family. Too many of these children are placed in institutions
how wonderful that they are willing to care for her at home. God Bless them.
I think it is inhuman to do that to a Kid. It makes me sick to my stomah that parents would do that. I compare her parents to the nazis in germany in world war 2
That is terrible.
I worked with the disabled for 25 years and have watched many beautiful children grow into lonely adults . The reasosn was they had gotten to big, heavy to be taken out or on trips anymore. Children grow out of the family, no matter how loving they are , ability to care for them and are put into institutions. This family wants to keep thier child with them and give her a good life if that means keeping her a managable size and weight so be it. Consider the options .
Something else to keep in mind is that other sites mentioned the fact that Ashley's family has a history of breast cancer. By removing breast tissue, they were helping to protect their daughter vy greatly reducing the risk of cancer. Would it not reduce her dignity any more if her parents had to perform breast exams on a grown woman every month? How would Ashley ever know if something was hurting or wrong?

Her parents' blogs lead me to believe they wanted nothing less than to love their daughter in the fullest way they could, and in a way that would benefit her the most. While a secondary benefit may be convenience for the parents, this treatment seems to benefit Ashley in endless ways.
God Bless these parents and this child. What a beautiful gift they have given her! Love, inclusion, improved health!!! These parents deserve a medal! And parents across the country should support them and inform our lawmakers regarding the importance of individual needs and decisions in the best interest of our family. We are the parents of two special needs children that we adopted. We know exactly what this family is talking about. We have first hand experience in these kinds of issues, and this family needs to be supported. If you aren't there, then you don't know, and you have no business judging. Everyone will experience something similar to this in their lifetime. Either a parent, spouse, friend, relative, whoever it is, you will face the need to make individual needs decisions. You'd better hope it will still be legally up to you and not dictated to you by the government. Democracy, or dictatorship? You decide...
Although I cannot and will not pass judgement on what these parents thought was best for their child, I have to wonder, what will this lead to? Certainly, if this family studded their disabled child's growth, many other family with severe disabilities will at least consider doing the same and in time it may even become an accepted practice.
The issue of stunting her growth is not the real issue. The real issue is whether she should be alive at all. Her brain functions at so low a level that she cannot even eat, so she is fed through a tube. She should have been given palliative care in infancy. Doctors should never have done surgery for tube-feeding. And her family should have held her and loved her as she died.
Regarding Ashley's stopped growth:

As parents of a severely disabled child, we are apaled at the hipocresy of the so called ethicists of the world, who are up in arms against her parents and caregivers. We wonder how many of those critics can fit into their shoes, struggling with full time jobs, other sibblings, and the day to day routine, on top of the 100% dependency of a disabled loved one. We share their pain and sorrow, and totally understand and support them. May God grant them strenght. Our love and prayers to them.

Will & Viv.
I would like to just add that I commend the parents for making such a tremendous decision. All too often people choose not to act for fear of what others may think and thus allow a situation to grow into a larger problem. Whenever children are involved, decisions of when to and when not to protect them are often difficult. What these parents did was weigh the advantages with the disadvantages and in only this circumstance, decided that intervention was necessary. Instead of passing judgement on circumstances we can not begin to understand, we should instead offer support and understanding to Ashley and her family.
I think the parents have put their daughter through a new type of torture, the equivalent of medieval torture. I only posted to this site because I was literally in a state of shock and disbelief. Why would the parents want their child to endure the pain of surgery and discomfort? They have ruined what little life she had left that was deemed normal and made her into a circus freak. The questions that cross my mind are as follows; What about medicines the child will have to take to make up for her removal? Why didn�t someone stop these people? What physician could perform such a procedure and call himself a doctor? I actually believe the parents themselves may be some type of freaks, not the child. "Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a small, lighter body that is better suited to constant lying down and is easier to be moved around," her parents wrote, adding that since she looked like a girl, she'd be less of a target for sexual predators." If the kid is not able to move, then why are they worried about sexual predators? Encephalitis is swelling of the brain, and the survival rate is not high. Seriously here folks, consider for a moment, how cruel life has already been for this kid, now she can thank her own parents for a new level of cruelty and loss of dignity. The child has been born with a terrible condition, and now (I assume Ashley knows she is alive & can hear people talk), now she has no breasts or uterus? She will be the center of controversy & jokes for the rest of what life she has, no matter where. I cannot even conceive of the type of parents who would do such a thing to their child. This is not "eugenic�. I'm in the health care field and this goes against every ethic I can think of at this point. I think all the children the parents have should be removed from their home immediately, and they should be court ordered to undergo a psychological evaluation.
I don't have a problum with what they did . just that the ran off at the mouth and made it public. they did not do it foir the love of the charld just to get the notariaty. if the realy loved there charld as much as the say they would of just did it and kept there big mouth shout i'm not trying to be harsh but it is the truth shame on them.
Sexual predators? The statement written or quoted, "her parents wrote, adding that since she looked like a girl, she'd be less of a target for sexual predators."- predators.http://www.cnn.com/HEALTH/blogs/paging.dr.gupta/

That is an far fetched opinion-predators target children!! This whole story is a mess! Somethings smells fishy. Why would parents even think of such a remark.? I totally disagree on what they and their doctors and ethicist's... have done!This story is like a written research paper with highlighted statements supported by doctors or human scientists!

In the beginning if such parents decided to carry the burden of a child that has no chance in life, then so be it..take your responsibilities as they come..the time to adjust or modify a human to help us help that human being be more comfortable.?? or easier for the parents to bare the mistaken burdent of keeping a child with not chance in life...im a realist, in my opinion this child is a beautiful child as all children are...but the decision to modify a human should of been done or decided on before birth or as this child should of been institutionalized and not been modified like an experiement. The parents in this issue face a morality issue not yet or never accepted in society ..totally wrong..If she were my child my little angel, NO matter how heavy the burden is..The fact remains to carry on the choice to care for her as she is and give her the right to be as she is ..not modify a human being no matter what state they may be in. totally wrong!!!! Discussting. As a woman I would be ashamed of looking at my child after this procedure..for I have commited an immoral choice of life and god. Science and Life. Not good. what is our future like next modify all humans?
I don�t really think it is any of mine or your business. This is the problem with the world today too many people are worried about what someone else is doing in their family. Taking your child and making them a child for life would be hard enough let alone everyone putting in there worthless 2 pennies such as I am doing now. It doesn�t matter let them make their choices and live their life because guess what people it doesn�t have anything to do with you or me or even the doctors or the ethics comity. who are they to say it is right or wrong. Because some one said that they are Ethical. Leave them be and go on with YOUR OWN LIFE. Thanks and have a great day...
Cathy from Louisville you have no clue. Your comments stem from ignorance and a blatant disregard for Ashley's quality of life. She loves to be held, loves to be carried and apart of her family. She doesn't know what a period is and quite frankly is far more fortunate for not having them. I speak from a heart and mind of knowledge. My daughter has the exact condition that Ashley has. Please take some time to understand the condition these children have and speak not from your ignorance, but from empathy for the children.
I believe that the parent's decision was the correct one for thier daughter and their family.
I am shocked, frustrated, and angry about the negative statements that others have made in their comments.
The parents had to make a difficult decision.Given the circumstances,i feel they have made the right decision.To the critics,have you walked a mile in their shoes.
Well, the eugenics comments show a remarkable ignorance of what eugenics *is*. She wouldn't have had children anyway (and if she did - well, it would have been the result of abuse by some REALLY depraved person).

The sticky thing is that it DOES result in greater convenience for the parents (regardless of what they might say). BUT and this is important - that convenience will result in a pretty big improvement in the quality of her life. Giving full-sized adults who are as helpless as a baby, the care they need is very, very difficult - so difficult that they often don't receive the care they need. Christopher Reeve, who had EXCELLENT care, died of a cardiac arrest surrounding complications from his bedsores. If this can happen to someone who had excellent care, what must life be like for someone who had only average care?
Her parents sound like they are taking good care of Ashley, let them make decisions that will be best for her and their family. How wonderful that they always want to hold her close.
I think I should ad one last thing. My daughter is 16 weighs approx. 90 lbs and is as tall as my 5'2" wife. Aware I am of the dificulty of caring for a disabled child and carying her where she needs to go.
i would not call this case eugenics, that is something that is more pertant to 'clensing' practices that are also labled as genocide . Ashley is not being prevented from reproduction nor being taken out of the 'gene pool'. The fact is that her chances of ever being a mother, or anything but a dependant is highly unlikely. Granted the treatment will stop all of her reproductive processes, but it is not likely that she would ever find a mate greately decreasing her chances of ever putting her reproductive abilites into practice.
For the majority in cases such as this, where the subject is a human being, it often strikes a sour note with most when it should not. the fact is that Ashley, although a human being, is deficent in any ability to function as such. Her parents made this decision for her best intrest. the rising cost of healthcare would make her a burden on the family, physically and financially...but that is not he important thing. what is important is the quality of ashley's life: keeping her in physical state close to that of a child allows her to have a higher quality of interaction with her family.
since ashley cannot decide for her self what should be the prooper course of action, those closest to her are given the responsibility of acting for her in her best intrest. There are no ethical or moral injustices here, this is simply what is best for her and her family.

Vincent S. Rossio
University of Michigan-Flint
Philosophy Major
The majority of commentary so far has been sensibly supportive of the parents, and cognizant of the tragic reality that has been imposed upon these parents. Personally, I agree with their actions; and they are fortunate they didn't run into the "right-to-any-kind-of-life-at-all" mindset on the ethics board at the hospital. A couple of the comments, however, are ludicrous, and show not only ignorance, but a lack of comprehension of the particulars of her condition.

Specifically, Cathy from Louisville comments that "encephalitis is swelling of the brain, and the survival rate is not high." Exactly what does encephalitis have to do with her condition? Get out a dictionary, Cathy. And you are assuming "Ashley knows she is alive & can hear people talk". She is a 3 month old infant intellectually. She does not "know" she is alive. She doesn't "know" she has breasts any more than she knows she has a left foot. But if she started menustrating, she would know she was in discomfort. She hears people talking, but has no idea what is being said.

Loss of dignity? Having to have your parents change your soiled menstrual item is a bit more undignified, in my opinion.

Disturbingly, there are a few people who are completely clueless as to who and what a sexual predator can be. To those who think that just because she is in her parents' care, she could not possibly be molested, let me remind you that there are hundreds of perfectly sentient children who are sexually molested every single day, yet are under their parents' care. It happens, despite the best precautions parents can take.

Daniela from NY's assertion that "What your doing is selfish - your pumping a child with a substance to prevent nature" strikes me as hideously ironic, given that this child has already been pumped full of substances to prevent nature from taking its course...in this case, from allowing her to die naturally many years ago.

And beca from Dallas..."predators target children"...please.

Yes, some do. But there are predators who target the elderly, the disabled, as well as perfectly healthy victims. There have been cases of funeral home workers who availed themselves of the cold opportunities.

But beca's statement that "this child should of been institutionalized" is the most heartless, callous, and arrogant yet. The parents chose to bring the child into the world. It did not sound like they knew she would be brain damaged before she was born. They chose to provide aggressive medical care rather than palliative care only. They chose to bring her home and care for her rather than signing her over to "live" in an institution. These might not have been my personal choices, given the same situation, but they deserve the dignity and respect, for their choices. No one has the right to say what they "should" have done. They had the choice, and they are following through with it. I applaud them in their commitment.

I am 100% pro-choice, and I support these parents in the choices they have made, and am glad they had the freedom to make those choices, to choose what is best...because ultimately, it is about what is best for the child.
I am the grandmother of a mentally and physically disabled child, a beautiful 7 yr old boy who will probably never walk, talk, sit up, dress himself, etc. For those of you who criticise Ashley's parents for their decision, I would like to see you spend a day caring, carrying, washing, etc a disabled person. My daughter cares for her son who now weighs about 40 lbs. What she does not she will not be able to do when he weighs 100 lbs or more. Should he grow to be a full size adult male she will have little choice but to put him in a institution where ALL of our TAX DOLLARS can help pay to care for him!! For those of you with healthy children- don't judge- find someone in your neighborhood with a disabled family member and offer to help out a few hours a week. This country offers very little in the way of assistance for those of us who choose to care for our disabled children at home.
What Would I Do?

I'd dig a hole in my back yard and scream into it ever day until the tears stopped. Then I'd talk to God. I mean really talk to God.

Parenting is tough already. I could understand if this child had a chance at a life. She doesn't. She'll never have children. She'll never have anything but her parents. Someday they will leave her too. I support euthanasia in instances like this. She is an angel and a blessing now. She is a survivor. What has she survived for though? Parents who need someone to care for?

Keeping her as she is is cruel. Changing her to make her parents lives easier is terribly selfish. The worst kind of selfish cruelty. This child needs the kind of help only a real parent can give. The kind of love that knows mercy and letting go. Sometimes death is a mercy.
I believe that since we are not in the position of those caring for this child, we have no right whatsoever, to make judgements as to what is right or wrong. These parents have dedicated their lives to make themselves a family, and why not take measures to reassure their own familyhood than to make this-surely painstaking decision-a reality, and be that family they are meant to be. On the brighter scope of things, Ashley, will be cared for, loved and surrounded by those who matter. Who are we to judge ones happiness, if we are not walking in their shoes! Bravo to the parents and those who made it possible for them to remain a family, and not be ruined by "society's" mores, and following their own. It takes a lot of Strength and Courage, that spiritual people can only understand. This is why God only gives people as much as they can handle. There is ALWAYS a plan. Just not Yours.
As a nurse, I cannot begin to describe the dismal quality of life brought on by bedsores and intestinal obstructions from immobility, the indignity of breast cancer, and the horrors of our miserable system of institutions and group homes that so many of these unfortunate folks end up in. (And yes, group home dependents get raped frequently - that's what predators do: prey on dependents.)The 11th commandment ought to be: "Thou shalt mind thine own business." Some other thoughts that come to mind are: "Judge not, lest ye be judged;" "Walk a mile in another's shoes." Or perhaps my favorite - "lack of knowledge can be fixed, but ignorance goes on forever." My thoughts, prayers and admiration go out to the parents of this child for having the courage to love her; to her health care providers for having the courage to 'first, do some good,' instead of just not doing harm. My thoughts and prayers, but NOT my admiration, go out to those who, in their ignorance, criticize what they don't understand and frankly is none of their business - these people deserve our love and compassion almost as much as Ashley and her parents do.
To all,

I have a 7 year old son with the same condition. I don't know how many times I have thought about how I will be able to hold and comfort him when he is big and I am old. We love him very much.
My daughter (Ashley) is now 19. She became brain damaged at 3 months and suffered several life threatening illnesses. I decided to use a more homeopathic approach and with a supportive and understanding Pediatrician we have maintained her health in a normal course. Normal growth, Normal Hormones is important for the child and the young women she is. My Ashley is not ever going to be the size she might have been because she does not stand or walk and her bones are not as dense due to this non weight bearing. It is incomprehensible to me that anyone would surgically alter their child to keep them easier to care for. This does not take into account that all hormones and organs in the body have a purpose and a part in the overall physical and mental growth of a person. Especially when the cause of the brain damage was unknown. We continue to care for our Ashley to the best of our ability and we will pray for all other parents who care for disabled children daily.
I don't think your or my opinion matters that much. What these parents did, with love, for their daughter, is what matters. Caring for a large brain injured child can be quite difficult, especially as the parents age themselves. These loving parents did not put their daughter in an institutition. To those people who have the audacity to judge Ashley's parents harshly: judge not lest ye be judged and then walk a mile in their shoes. I commend these parents for being good parents!
In this whole situation,there's a disadvantage and an advantage of the decisons the parents had made.
Firstly(disadvantage), why make the child be a baby or a little kid forever, it's just not appropriate. A child has a free will to grow. you can't just make them be stuck as a baby forever. I don't think ashley would like that either. God gave us those oraganisms, why take them away???

secondly(advantage),on a second hand, she won't be able to take care of herself properly, infact she can't. It'll be in the care of the parents, who would ofcourse like to make it easier for themselves.
so such decisions like this should be carefully made with serious discussions. cause what the parents did and what people think can both lead to two different dangerous situations. so every ideas have thier own disadvantage and advantage. thier not all right technically.
Her parents did what they had to do in order to provide the best care they could for their severely disabled child. They did it out of love. I don't understand why persons who have never attempted the daily care of someone who is absolutely dependent on that care feel they have a right to judge this decision, or to affect future similar decisions.
As a nurse I see too often the results in patients of those who have no been well cared for. This must have been a very tough ethical decision for her parents but given that they are caring for her you would hope that they have her best interest at heart. Until you have walked a 24 hour day in their care giving shoes we have no right to assess blame, or praise for that matter.
I watched my mother law care for her niece for 30 years. Her mentality never matured but to about 6yrs old. Many terrible issues like a 200pd six year old who thinks they are bleeding to death. you are the only person who has mention the menstral cycle, pregnancy because of caregiver abuse, and the shear size made it almost impossible in her last days. She died at 47 a couple of years ago-with age also came violence I can understand many reasons that will benefit this pillow angel not just the caregivers.
Clearly Art Caplan does not have primary care of a severely handicapped child (nor do any of the other sanctimonious people who are appalled at the parents' decision to stunt Ashley's growth). Before anyone passes judgment, they should (a) read the statistics on the stress that families with severly disabled children undergo (including a dramatic increase in divorce rates & other children in the family getting insufficient attention); and (b) volunteer to take care of such a child for one week. As the American Indian proverb goes, do not judge someone until you have walked a mile in his or her shoes.
Till you walk a step in those parents shoes, then you should not be critical of their decision. I'm sure it was a tough decision for them, and they made the right one. Only people who have a child in that situation can comment. The others that have commented negatively are idiots.....
I disagree with any person claiming that it is nature's way to allow a severely mentally handicapped person to mature into a full adult. And nobody can say what "God's way" truly is. In biblical times, or without modern medicine people born with these severe disabilities would DIE.

Society today puts strain on families to provide health care for people who when left to nature would never survive. Do no judge this family for taking care of their child in an easier manner.
Aside from obvious admiration for these parent's strength and capacity for love, let us be pragmatic. What will happen to this child when her parents die, of a natural, time controlled death, or by accident, too early. Being able to carry her, bathe her, croon to her in one's arms, represent the only hope for her to achieve her life cycle with a minimum of human friendliness, at least.How can one ask a stranger to be as attentive to her as her parents are? Everything must be done to face the ultimate future and this is what loving parents do. Thank the heavens that such peolple do,indeed, exist.
Ashley is fortunate to have caring parents like the ones she has. Who thinks about the caregivers? Part of Ashley happines should be the happiness of her caregivers. My take on this? Leave Ashley parents alone; all that matters is the happiness and the love that they bring to one another. What importance is whether Ashley got breast or is menstruating? I bet not Ashley.
I agree with the family. I have worked in long term care facilities for 17 years. I have helped take care of these "babies" who grew into adults. The parents were forced to then place them in institutions because they could not physically take care of them any more. We loved and cared for them, but it is never the same as being in a personal home with parents/siblings. I totally understand and support them. The ones who do no support them need to shut up and leave this issue alone.
Ashley's parents did the right thing. They are caring for her and I do not see any need for the rest of the public to but into their business. I could not and would not do what Ashley's parents are doing.
what would we do if we were in this situation? at least they consulted specialists, wanting what was best for Ashley. How many children are born with birth defects and when they start growing and reach maturity they cannot be handled by their family and have to go into a home...it must have been a tuff choice to make , my prayer would be that Ashley has the love, comfort and security of her home and family as long as she is in this world...
I will never understand the "holier than thou" additude of people who have no idea what families of children who will never mature mentally past early infancy spend their lives dealing with. Ashley's parents need no opinions from the rest of us, they have done what they deem best for their child.
I am not in the parents' position so I will not judge what they have done.

I have a huge amount of respect for the staff at Children's Hospital from the dealings I had with them during the short life of my second child. My child was medivac'd to the hospital after about 24 hours of life. The staff at that hospital discovered what was originally thought as a premature baby wasn't - and I had similar ethical questions to deal with - such as what measures to take to preserve life, what would be the results of those measures or withholding those measures. We made the decision to let the child survive without the heroics - and that child lived another week, then died.

I had many regrets about this for many years - until I read about a special needs child who had been born with the same issues mine had - but not quite as severe. That other child was blind, deaf, mute, and had to be fed through a tube as there was no ability to feed independently.

As a result of reading about that special needs child being up for adoption, I discovered that I had made a correct decision.

Since Ashley's parents are willing to continue care for her, then they should be allowed the peace of knowing they made a correct decision for Ashley and for themselves. We, who are not in their shoes, have no business second guessing what should or should not be done for this special child.
The fact of the matter is that no one has the right to pass judgment on the difficult decision that this family was forced to make. Their decision doesn't seem to have any negative impact on Ashley's life. TO those worried that she will be viewed as a "freak" because of this, how do you think that people would react to, in essence, a fully grown and developed baby? Do you want to be the one who has to clean up her menstruation, do you want to try to comfort an infant who doesn't understand why all-of-the sudden it hurts to lay on her chest? You critics make me sick. Put yourself in this situation and see how well your precious ethics hold up.
I would do the same thing.
As a parent of a disabled child, I have made decisions for my son that he is not capable of making. I have been told by some parents that I should not have made some of the decisions that I made, that I should have waited until he was "old" enough to decide for himself. My point being, as a parent, we make decisions for our children everyday-how they dress, what they eat, etc. If your dying child needed a heart, would you "wait" until they were "old" enough to put him on the donor list for a new heart?? OF COURSE NOT, YOU as a parent would make the decision. Obviously, this little girl cannot make decisions for herself, so her parents did what they felt was best, which is what a parent does for their children EVERYDAY!
Kudos to Ashley's parents for lovingly accepting the responsibility to care for their disabled daughter and doing what is reasonably necessary so that they can. I would rather be their daughter than Art Caplan's. Mr. Caplan would have me depend on other people (who would not be nearly as reliable or loving) and expensive equipment to accommodate my disabilities and larger size. He obviously is speaking as though the world were ideal and, of course, we know it is not. Surely, he must be pulling our legs! Shame on you Mr. Caplan!
I don't know what I would do as I have never been faced with that type of decision. What some people forget is that it is the parents that have to live with their decision concerning their daughter. I find it amazing that some people feel they can read others minds and decide what is right or wrong for them when they are not living in the situation. Maybe some people have too much time on their hands. I support the parents in whatever they decide to do and am very happy it's not my decision.
It appears that these parents did a great deal of soul searching and followed through on discussions with doctors and ethicists. So why should we the public have any comments about this most difficult decision. Until we walk in the shoes of someone, know their situation, their reasons for making the decisions it is ridiculous to second guess. It is like Terry Schiavo all over again. Let people make their own decisions within their families without this media attention.
My name is Gina and I live in Nashville Tennessee. I was blessed with a little brother who suffered from severe Cerebal Palsey. Although we were told by doctors that he would not live past a year and that my parents should just institutionalize him, they chose to bring him home and love him as if he were born perfectly healthy. He lived for 6 years. Six years that I will always cherish having him in my life! The lessons I learned from him about compassion, patience and unconditional love were priceless! When he did finally die at the age of six, of septisemia (Basically blood poisening from leakage in a torn intestinal wall that was weak because he was unable to use his muscles for pushing bowl movements which weakened the intestines) The lesson of losing someone so special and getting to recognize his value early on at my age of 12 was the best lesson of all.

I believe he lived so long because he knew he was loved so much. My parents made every effort to care for him even at the unfortunate but unhelpable, expence of neglecting their other children. who by the way, have no regrets for that!! We were willing!
Some examples of this care which were exceptional to me looking back were the fact that my parents always went to the extreme to make things as comfortable as they could for John Eric. While bathing him, which my mother did EVERY night.. she would always make a bed in the tub, pillow and all, out of towels so that he would not get cold and would not feel the hardness of the tub(Can you imagine the wash load?). She would take him out and dress him so beautiful and blow dry his hair to perfection. You would be suprised to know how many people do not take the time to even put matching clothes on children who are disabled. They are viewed as imperfect and therefore why bother. When my brother had to use the bathroom... my parents could have just left him in a diaper and just changed it but my dad always, after the age of 3,would take him to the bathroom and put him on the toilet til he would go. I was really confused by this so one day I asked my father why he did that? his answer was that he wanted to give his son dignity. I will never forget how it solidified to me that they, my parents, would go to the ends of the earth for not only him but for my sister and I as well if needed. Another example and to me the most important was that knowing he wouldn't live and could die at anytime anyday, they could have just given him baby food til he finally did die. But they chose to get up every morning and cook his breakfast with us and blend it to the right consistantcey as he needed. Mean while my mother would be sitting at the table giving him his medication (Phenobarbitol, Zurontan, Valium etc.) to control his stiffness from atrophy of his muscles and for the grand mal seizures that he suffered. I always marveled at the fact that they got up so early to do all this every day! No day offs for six years.

The extent of John Eric's brain damage took his sight, and all the motor skills that a normal child would develop. However, his hearing was superb! Although the doctors said he would never know us or be able to react to us, John Eric proved them wrong! He would react diferently to each one of us. He actually KNEW who was entering the room. At night my mother had a routine for him.. dinner, bath, the usual that every child needs and when she would put him in his crib she would always lay him on his side, tuck the blankets around him and while kissing him would pat him 3 times on back. My mother would tell you that he hardley EVER cried but if she didn't do that routine, he would NOT go to sleep and as soon as she would.. he would be out in seconds.

So what I'm saying here is that he was so special and loved and apart of our family. Last October he would have been 32 years old. What I would give to have him back. What I can't imagine or fathom, is how if he were here now, how my parents would have been able to continue to give him all that special love which I feel extended his life and life quality. Although small by comparison to most 6 year olds, my mother still suffers from back issues from lifting his body which basically was dead weight. At 32 years of age, He would surely be more than 100 pounds and perhaps would most DEFINATELY have to be institutionalized because so much help would be needed for just the basic needs. There would be no holding, I'm sure the staff wouldn't have the time to lay blankets down for him to bath or pat him to help him sleep. It makes me more sad to think of that than it has been to deal with his being born and his unbelieveable death.

Earlier I said I would give anything to have him back but what I meant to say was that if I could have him back and he NOT have to have such a diblitating condition, I would honestly give my life just so my family could love him again. I am not so selfish that I would want him to continue to suffer, even though he was loved to the fullest, he deserved a better life and I take true confort in knowing that he is a whole person now, feeling no pain of needles or an itch he was unable to tell us about and scratch or the discertedness of being in unfamiliar places other than his home because he was blind!

Finally my point of telling this story of my beloved younger brother, is that I understand fully what this family has gone through and I think that they do have this young girls best interest at heart!! Her parents know she will suffer in her life and just want to physically beable to care for which inturn will help her to grow with the family emotionally and give her a life being included without the burdens and hardships it will take to care for her. Don't get me wrong, I don't mean that Ashley is a burden in the sence that they don't want to have to take care of her, but to be able to take the best care of her without the limitations it would take if she was full grown and having periods and developing as women do. After all she will never experience the purposes of any of them. She will however always be able to be held and included in family trips easier there for enhancing her life.

Please don't judge these people till you've walked in their shoes. If you have, just know that the love you feel when making the decisions that you've made for your child, because you have choices, is the same love ashley's parents are using to make their decisions for Ashley.

Sincerely,
Gina Hortman
Nashville Tennessee
My heart goes out to the parents and family, and most of all to Ashley. The decision that was made was not one done in haste, but with careful consideration towards what is best for Ashely's long term care. Her parents consulted doctors and ethics experts for guidence and I'm sure that there were lengthy debates and passionate viewpoints expressed. I applaud them for making a difficult decision and for having the foresight to share it with the world. Trying to hide what was done would have only heightened the negativity that is flowing from this tragedy. It dismays me greatly to hear the dispicable words being directed at the family and medical specialist who undertook this daring course of action. I've read where people have likend them to Nazis. Some people have have accused Ashely's parents of being selfish and only caring about how this affects them. This is absurd. No parent wants to make stunt their child's growth in any fasion. Every good and decent parent on wishes the best for a child to grow and mature and reach adulthood and have a fulfilling life. Sadly, Ashely can't do this. She is permanently stuck with the mental and physical abilities of a 3-month old baby. At some point this family will have had to place her in some sort of institutional care as she matured physically and out grew their ability to care for her themselves. With such specialized care being extremely costly, the parents faced a terrible price finacially in attempting to assure adequate care, let alone the price it might have taken on Ashley to be away from those who have nurtured her from the beginning. Imagine a baby left in the care of the hospital and never knowing her mother's touch or smell or voice. That would have been cruel, not to mention the risks she might run as a fully matured, woman with an infants brain. There is a sad fact that exists in this country that there are people who prey on institutionalize adults and abuse them mentally and physically and sexually. The parents and medical professionals considered all of this and more to reach their decision and I challenge any of you with critical responses to think solemnly about these issues before letting your passions get away with you.
It is a sad situation for both parents and child. No caring parent would wish to change things for the worse for their child.

It sounds as though Ashley's parents and Ashley's doctors have been very thoughtful and careful to come up with a solution for a sad situation that works for all of them.

It is easy for people to say what others "should or should not" do. What works for one family will not necessarily work for another family.

I believe we need to respect the wishes of the family involved in each situation.

May Ashley's parents continue to take care of her so she is in less pain and anguish.
Ashley�s parents made the appropriate choice given the situation and what they thought was best for their daughter. With Ashley at a manageable size and weight, they are able to hold her, take her on family trips - give her better care overall. This would have been difficult if Ashley had not had the treatments. If they had not opted for the treatments, they would have had to face not being able to afford appropriate care since they did not qualify for State help for caring for disabled people and expensive caregivers. Treatment seemed to have been the appropriate option, especially when hope for her condition to significantly improve was �non-existent�, as indicated in �Ashley�s parents Blog.
Response to:
If Ashley can't talk, it would be hard to find out what she wants, but if it was my child in the same condition, all I would do is try to make her life as happy and comfortable as possible. I would try to find out what she likes or loves and surround her with it. Whatever I could find to try to make her happy. I would tell them to get whatever happiness out of life that you can get and give it to the child too.

I know that sounds like pretty words and no solution, but I don't know the answer in this case, I'm not in their shoes, and I don't think the general public has the right to judge them.
Posted By Ann, Nashville, TN : 10:17 PM ET

I agree that the general public does not have the right to judge them. Their situation would be difficult for any family to deal with. How can these parents be seen negatively when they made the best choice for their daughter? If Ashley had not had the treatments, they would not have been able to afford the best care for her in the future. It may seem cruel to put her through the treatments to keep her physically at nine years old, but emotionally, she needs the care her parents can give to the three-month old in her. They are only able to do this by opting for the treatments.
I think it is a family's decision how best to care for a critically ill or disabled loved one. While on the surface it sounds controversial, Ashley's parents are not practicing eugenics. Ashley will never be able to engage in a normal reciprocal romantic relationship nor will she be able to make an informed choice to have children. If she were higher functioning this would be an issue. All the same, it can be argued that there are alternative therapies to control the menstrual cycle and the levels of female hormones. As for her body size, while it is wonderful and loving that her parents wish to carry her and hold her, I would suggest that physical affection can still be lavished on a larger person, who might require a Hoyer lift and a wheelchair. Still, like I said initially, it is that family's decision and no one should second guess them. God has given them this child, and the fact that they are caring for her themsleves and have not placed her in an institution speaks volumes.
ABOUT THE BLOG
Get a behind-the-scenes look at the latest stories from CNN's chief medical correspondent, Dr. Sanjay Gupta, and the CNN Medical Unit producers. They'll share news and views on health and medical trends -- info that will help you take better care of yourself and the people you love.
SUBSCRIBE
CNN Comment Policy: CNN encourages you to add a comment to this discussion. You may not post any unlawful, threatening, libelous, defamatory, obscene, pornographic or other material that would violate the law. Please note that CNN makes reasonable efforts to review all comments prior to posting and CNN may edit comments for clarity or to keep out questionable or off-topic material. All comments should be relevant to the post and remain respectful of other authors and commenters. By submitting your comment, you hereby give CNN the right, but not the obligation, to post, air, edit, exhibit, telecast, cablecast, webcast, re-use, publish, reproduce, use, license, print, distribute or otherwise use your comment(s) and accompanying personal identifying information via all forms of media now known or hereafter devised, worldwide, in perpetuity. CNN Privacy Statement.
Home  |  World  |  U.S.  |  Politics  |  Crime  |  Entertainment  |  Health  |  Tech  |  Travel  |  Living  |  Money  |  Sports  |  Time.com
© 2014 Cable News Network. Turner Broadcasting System, Inc. All Rights Reserved.