If you're pro-choice on abortion, how do you feel about Ashley?

[pnwmom]

And her parents right to make decisions on her care?

Ashley is the 9 year old girl with the development of a 3 month old baby, whose parents have taken medical measures to keep her from developing into a sexual adult, of adult size. They feel that doing so will keep her healthier and more comfortable, and allow her to live at home rather than being institutionalized.

For the parents blog, read here:

http://ashleytreatment.spaces.live.com/blog/

I'm wondering why a DU'er who believed in pro-choice -- including, if necessary, late term abortions -- would condemn these parents for making medical decisions that could make it easier to care for their child, and increase her comfort.

Why is it okay to abort a 5 month fetus with Downs syndrome (or an older fetus for whatever reason), but not okay to take medical measures that -- by stunting her growth -- may improve the care of a child like Ashley (who must be tube fed and is far more difficult to care for than a child with Downs)?

[Az]

1. May

There are a number of issues inherant to this issue that make it difficult to rectify. But the word may is perhaps the most problematic. We cannot ask Ashley if she wants this or even if it does improve her life if she is even experiencing life or anything.

For me though an issue in this case that is a tad troubling is the removal of her breasts. I am having trouble seeing how this will improve her condition in any meaningful way unless they somehow are knowledgable of her developing exceedingly large breasts before she actually develops them. Is it being suggested that all breasts are painful? It is this issue that tips the hand and makes it seem that the parents are trying to keep their pillow angel rather than striving to improve her condition.

What evidence do we have that removal of her breasts will improve her condition? I admit this is a kneejerk reaction on my part but it is still troubling to me none the less.

[pnwmom]

3. Did you ever have breast buds yourself? I did, and they're pretty darn

uncomfortable. In fact, they hurt so much I thought I had cancer . . . and I've since read that other girls have worried about the same thing.

So when these parents say that their daughter appeared uncomfortable to have the straps across her chest (used to support her when she sat up) when her breast buds developed, I believe them.

[Heidi]

4. Family history of female family members with large breasts on both

sides of Ashley's family.

Also,
1- Avoiding the possibility of painful fibrocystic growth and future related surgeries. Women in Ashley’s lineage have a history of fibrocystic growth.

2- Avoiding the possibility of breast cancer. Ashley has breast cancer history in her family.

[Az]

8. Ok, that is valid

Circumstances are always important and that was a condition I had not yet been aware of. The constant trouble of commenting on someone elses actions online.

[Bluebear]

2. I would counsel that reproductive issues not be comingled with this issue

A woman's right to decide issues concerning her own body is a totally different ethical issue. Fortunately, Republicans don't care about babies much once they are actually born.

[pnwmom]

5. I think it's a family privacy issue, as opposed to a woman's privacy issue,

but the issues of privacy are related. The issues are also connected to the Terry Schiavo case. In general, when the decision is difficult, complicated, and not black and white, I think the family should be left alone to make the best decision it can.

[Heidi]

7. Exactly, and it's not as if there was no ethical oversight for these decisions.

The surgeries were approved by the hospital's ethics panel. I won't judge this family for doing their best to ensure their daughter's quality of life.

[Maddy McCall]

10. I wouldn't judge them, either...

but I don't see any connection, even as affirmed by the OP, between women's right to choose and this family's decisions.

No condemnation from me. I just fail to see the logical connection between the two situations listed in the op.

[Heidi]

14. Medical privacy, maybe?

:hi: Maddy! :hug:

[pnwmom]

19. Yes, Heidi. Very succinctly put.

And just what I was trying, however clumsily, to get at.

[Maddy McCall]

21. Hi, Heidi.

The medical privacy argument falls apart when the parents uploaded the photographs and discussed the situation on their blog.

Let me be clear: I do NOT disagree with the decision these parents made, nor their right to make it. I do disagree with the op equating their situation to women's choice.

How ya doing, Heidi? Have a good Christmas?

:hi: :hug:

[pnwmom]

23. No, they had their privacy when they were making the decision and

the surgery was being carried out.

They chose to go public only after doctors wrote about their case in a medical journal. They got a lot of negative responses and wanted to explain their decision.

[Maddy McCall]

25. Quoting you: "They chose to go public..."

Yeah, and with that choice came the knowledge that they'd be criticized. And it negates the "privacy" argument.

[pnwmom]

41. I'm trying to look at this from OUR perspective, not from the parents.

If we believe in general in the rights of families to make their own difficult medical decisions -- for example, as in the Terry Schiavo case -- why would we condemn these parents?

Of course when they wrote a blog they knew they would be exposed to critics, but they only started the blog AFTER they were receiving public criticism from people who read the journal article. The issue isn't whether they NOW can expect privacy -- clearly they can't. The issue is whether it is inconsistent for a progressive person -- who supports the right of families to make the right medical decisions for themselves -- to not support the difficult decision of Ashley's parents.

What is it that makes some of us -- I'm not saying you, Maddy -- think we can judge them in such nasty terms?

[Az]

42. Identity

You will find that all these issue ultimately wind up dealing with identity. Abortion, Schiavo, and Ashley all ultimately become issues of whether an individual is being placed in jeopardy or not. Not life. There is no question that life is involved in all three cases. But identity is life plus mind. Schiavo was a case where identity had been destroyed already. Abortion is a question of whether identity has yet developed. And in the case of Ashley it is a question of whether she has an identity.

[pnwmom]

44. I agree that all these issues are intertwined.

Thank you for stating this so clearly. I'm getting tired. (Finally!)

[Heidi]

49. With or without an "identity," Ashley can experience physical pain and suffering,

and her parents have made medical decisions that most likely will prevent her from developing uterine cancer and breast cancer, and the hormone treatment makes it possible for them to remain her sole caregivers, rather entrust her care to a long-term care facility. Edited to add: I consider this to be a very special case, and am not suggesting that its within the normal sphere of parental decision-making to have our daughters' breast buds and uteruses removed as a matter of prevention and comfort.

[Az]

50. Well thats the question

Are the reactions the result of autonomic nerve reactions (ie no experience of pain just reaction) or is there a being present there that is experiencing pain. If the latter is the case then it would be proper to continue as if she were a person.

[Heidi]

51. It's clear that a three-month-old child can experience pain, and

it's also clear from the published materials regarding Ashley's case that she has the emotional development of a three-month-old child, while her physical growth has been halted through hormone therapy at 9.5 years. I consider her a person; her parents and doctors consider her a person. I don't question whether she's a person, nor do I understand how "identity" is a factor in this case.

[Az]

52. That is too vague of a diagnosis

That is what a doctor tells a grieving mother. I cannot say that I know what her mental development is. This is a major problem with diagnosing a problem of this magnitude from our net based seats. Without examining the actual medical records and finding out exactly what is going on we have to rely on the very emotionally biased position of the parents blog.

[pnwmom]

61. So why not trust that the doctors at Children's Hospital, in conjunction

with the parents, made a reasonable decision?

[Az]

78. Trust as far as the information conveyed

We do not know the entirety of the situation. If the facts are as presented and the Doctors are not working towards some political agenda then I do not have a major ethical problem and instead only have a personal problem with some of their choices which could be ameliorated by further information.

[pnwmom]

79. What sort of political agenda?

[Az]

87. There are antichoice doctors out there

I have to contend with one regularly at the clinic I volunteer at as an escort. And frankly she is one of the most dishonest individuals I have ever come across. She uses her credentials as a doctor to misrepresent all manner of issues to the women entering the clinic.

There could be any manner of political agenda that a group of doctors could attach themself to. I am not saying this is the case here. I am just stepping back from giving absolute consent to the issue due to the limit of information I have on the matter.

In a nut shell I am agreeing that the weight of the doctors endorsement of this procedure is overwhelming but that there may be circumstances that I am not aware of as yet.

[pnwmom]

91. Your point sounds reasonable to me.

[pnwmom]

60. Don't you think the 40 doctors on the panel considered that issue?

[Heidi]

27. All of the surgeries occurred in July 2004;

the blog was started in 2006, apparently after the parents' decision came under fire following a medical journal's reporting of the "Ashley Treatment." I can understand why, after being silent for two years, the parents chose to start a blog and explain the the medical decisions they made on behalf of their daughter. I do believe the medical privacy issue is somewhat valid. I believe all individuals' medical privacy should be protected, and it should be an individual's choice whether to disclose medical information; Ashley's parents are the stewards of her rights, absent a guardian ad litem, it would seem to me.

(I'm OK. Survived Christmas, anyway. How about you? So good to see you, gf. :hug: )

[Maddy McCall]

29. Had the parents been identified prior to the blog's creation?

Were they identified in the medical journal article?

(I'm in full support of medical privacy, too. But the OP talks about a continuum of life, among other aspects, and hasn't really gotten down to the nitty gritty of discussing medical privacy.)

Ok...you mention parental rights. I will agree that this is an issue of parental rights more than privacy.

Indeed, I fully support their rights to care for their child as they see fit.

(I survived Christmas, too. Had a pretty nice one. Sad that the holidays are over, though. :( :hug: )

[Heidi]

37. I've gotta go grocery shopping in five minutes

( x( ), but I think of medical privacy as the right to make my own decisions about my medical treatment without government interference. That's not a legal definition, but that's what medical privacy means to me. :hi:

[Maddy McCall]

9. Most women who have abortions don't start blogs about it.

And as for your "issue of family privacy" argument, how does that work out when the topic is molestation or physical abuse?

[pnwmom]

15. They started a blog after the doctors involved wrote about the case

in a medical journal, and the parents wanted to have their perspective clear.

Their choice has nothing to do with molestation or abuse. It was approved by a committee of 40 doctors at a major Children's hospital who deal with ethical issues on a daily basis.

[Maddy McCall]

24. You're stuck in defending what they did.

I'm telling you that I don't have any argument with what they did.

I DO think that your OP--the analogy you created--is false.

Two totally separate issues. I won't go into the false premise--because that will open up the whole abortion debate, but to say that what you see as life others may not. After all, that's the whole stickler in the abortion debate.

You said that the issue is one of "family privacy." I said that, if that were the case, then molestation, abuse, and neglect could be considered "off limits" by declaring them issues of "family privacy."

Whether or not the doctors wrote about the case, the parents started a blog. Throws the whole privacy issue out the window. And by starting that blog, they've put themselves in a position to be criticized--and it's the right of DUers to be critical of their decision. I really don't see what your argument is, to be honest.

[pnwmom]

30. I'm saying that I think medical decisions are best made within

the family or, in the case of abortion, by the woman involved.

And that outsiders shouldn't be presuming to judge other people's difficult, complicated medical decisions. And that it is ironic that some DU'ers who would champion a woman's right to choose to abort a healthy late term fetus would condemn these parents for the private medical decision that they made.

What difference does it make if they have a blog now? If a woman comes out and says on a blog that she had an abortion in the past, does that suddenly give us the moral right to criticize her for having it? Should we be sitting in judgment of her? Or is she the only one who could decide what was the best decision in HER life?

Neither do I think we should be sitting in judgment of these parents, who made their decision as best they could, in cooperation with a panel of doctors.

[Az]

31. There is irony here

"And that outsiders shouldn't be presuming to judge other people's difficult, complicated medical decisions. "

To say this after calling for opinion .... well I hope we can all laugh at ourselves. :D

[Maddy McCall]

33. This thread could be used in a Philosophy 101 class...

to introduce students to logical falacies. :D

[pnwmom]

36. And it could be used in an English 101 class

to introduce students to needless repetition.

[Maddy McCall]

38. Not my fault that it's taken 40 posts to get to the bottom of what...

you were trying to say.

:shrug:

[pnwmom]

45. It's funny. You found it so hard but Heidi understood it right away.

[Bluebear]

100. Heidi must be a philosophical genius then.

You know, cause the rest of us don't get it.

[pnwmom]

35. I'm not calling for an opinion on the parents' decision here

as much as trying to understand the reasoning behind those who object to the parents having made the decision.

[Az]

40. I shall attempt to explain

I am of course presuming but I suspect I have some sense of where the "fuzzy" feelings are coming from.

It is that an invasive surgery is being performed on a nonconsenting person(?). Any time such an action is taken all of our danger senses should go off. Some people are just tending more towards caution than acceptance of this situation.

[mondo joe]

71. In such cases, custodians (typically parents) have the call in such decisions. However,

such decisions are always subject to challenge.

That's why there's such a thing as Child Protective Services - parents do not have unchecked power over the lives of their offspring.

[Maddy McCall]

32. Then privacy isn't the issue for you as much as parental rights are.

See post #29, where I addressed that.

[Pithlet]

67. They aren't related because

children, while members of the family, have their own individual rights. If a person feels that Ashley's rights are being violated (I'm not saying I agree with this, and I don't necessarily want to debate that issue either way), then it would make sense from their point of view to be against what her family is doing, and it wouldn't conflict at all with whatever views they have on abortion. Trying to make the two issues the same doesn't work from either point of view. It's why that kind of argument usually fails.

[Maddy McCall]

6. That perplexed me, too. What does one have to do with the other?

:shrug:

False analogy.

[pnwmom]

11. It's not a false analogy if you see human life on a continuum.

As I do, even though I am pro-choice.

And it seems ironic to me that it would be okay to abort a 6 month fetus with a functioning brain, but not okay to take measures to stunt the growth of a child with the brain of a 3 month old who is likely to live a normal lifespan, and whose care could be improved if she stayed smaller.

[Maddy McCall]

17. You're entitled to your views.

Doesn't change the fact that you've proposed a false analogy.

[pnwmom]

20. So you said.

[Az]

18. All life is a continuum

Life started only once on this planet. Everything since then has been a continuation from that initial selfreplicating molecule.

The issue in play here is not one of life. Ashley is a life no matter how you cut the issue. Just as a kidney is life. The question in play is one of whether there is a person named Ashley trapped in her body or if she is just a collection of parts that look similar to a human being.

Frankly I don't know in her case. There is evidence either way. Our value of humanity would suggest we should err on the side of caution in this case. But mercy suggests that other paths may be available as well. Sometimes the worship of life for life's sake alone can create tradgedies.

[mondo joe]

65. That's because you fail to understand the basis of the right to abort.

The right to abort has nothing to do with "stunting the growth of a child". It's based on the right of a woman to remove an unwanted fetus from her body.

[pnwmom]

66. It's based on the right of a woman to direct her own medical care.

And Ashley's parents should have the right, in conjunction with her doctors, to direct the decision on her care. There is no one else in a better position to make these judgments, IMO.

[mondo joe]

68. Not on the right to direct another's care, which is the question here.

The same basis that gives the woman the right to an abortion protects Ashley.

Parents are the first line in these decisions - but they are not unquestionable and they are subject to challenge.

[pnwmom]

73. Yes, they are subject to challenge. But are you saying

that Ashley's parents should not have been allowed, in conjunction with their doctors, to make the decision they did? And if so, why?

[mondo joe]

76. They ARE allowed to make that decision. And it is subject to challenge after

they have made it.

[donheld]

12. This is a very special case.

In this instance it think it's a very good Idea for the parents to let this be done. This is a time when it should be left to the Doctors and her parents. These parents have had to make many painful decisions about this girl's life and they don't need the world trying to tell them what to do.

[WritersBlock]

13. No condemnation here.

Maybe I missed something on another thread, but it's evident to me that her parents did what they thought was best for Ashley out of love and affection. Based on the weight/maneuverability issue and bedsore potential alone, I think they saved her from a lot of pain.

On edit... just saw the other thread. Had indeed missed it.

[cornermouse]

16. Sounds cruel to me. I wouldn't do it.

It appears she's had an awful lot of surgery, most of which could be considered to make her parent's lives easier in one way or another. That said, the things which they have done couldn't be done without a doctor's consent and aid. The high dose estrogen therapy thing... I'm not sure I believe that there will not be future consequences because there always seems to be future consequences no matter what you do. In several ways, she appears to be pinning high hopes on avoiding various problems that she might find out over time as unfounded.

No, I would never do something like that. I came away with almost the feeling that she is the family pet.

[pnwmom]

22. Do you feel the same way about parents who give their children

years of extra growth hormone so they won't be short?

[Az]

26. Do you really see that as a similar issue?

If Ashley were able to communicate and indicate that she was upset about her condition then I would have no objections. But the critical issue here is that Ashley is not making her wishes known. Unlike a short child that can express dismay or disappontment that they are shorter than other children Ashley is mute. We do not even know if Ashley is Ashley.

There is advisement and consent inherant in giving a child growth hormones.

[pnwmom]

34. Her parents say that she communicated discomfort when her breasts

began to develop.

I can believe that, because small babies can communicate discomfort, and because I know that breast buds can hurt.

In other posts, you seemed to think that the parents should be saved from themselves. I disagree. Since Ashley can never communicate her wishes, it is up to her parents to speak for her. And the parents don't need us to be saving them from themselves.

[Az]

39. May ... again

I hope I never conveyed the idea that her parents should be saved from themself. I have tried to couch my comments such that they should be calls to consider the various options. It may be that it would be best if someone freed them from the situation. By that wording the possibility that it may not be best is also allowed for.

[pnwmom]

46. Okay, I see what you're saying.

[cornermouse]

28. There is a big difference between what they're doing

and growth hormone for abnormally short but otherwise mostly normal children, which let me remind you, doesn't get picked up at the local supermarket on a whim.

Also you don't make a child taller to make it easier for yourself when you try to pick them up. The idea that she will avoid bedsores due to small size, I don't think will prove to be true along with the reasoning for the other surgeries that they put her through.

Like the abortion vs. surgery, this is a false analogy.

[pnwmom]

47. Are you a doctor? Because it was doctors who explained

to Ashley's parents that a number of medical conditions, including bedsores, are affected by a patient's size.

Some parents are giving their children growth hormones not for anything but cosmetic reasons. They would prefer their son be 5 feet 6 rather than 5 feet two. Growth hormones are powerful substances and they certainly don't get purchased at drugstores on a whim. But doctors prescribe them every day simply because some parents think their children will be better off if they are a few inches taller.

http://www.king5.com/topstories/stories/NW_010307HEKsmallgirlKC.57c2f0f.html

Dr. Wilfond specializes in pediatric bioethics at Children's Hospital. He was not yet on staff when the 40-member ethics committee agreed to Ashley's treatment in 2004, but he says he understands the decision to allow it.

"In this case, being short is a benefit to the child. There are other parents that make decisions to make their children taller because that may be a benefit to the child. And so I think what all these cases have in common is the intention to help the child," he said.

SNIP

On their Web site, Ashley's parents say they did what they believe is best for their daughter, saying: "Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers."

[cornermouse]

105. Clearly you have never been through the process of legal.

and justifiable access to growth hormone.

When you take your child to an endocrinologist they have all past records of height and weight. They run tests in the hospital through an IV (but because your child is so small, they have trouble getting the IV in and you may spend a very long time watching your child cry as they try) to try to determine the probable cause for your child's inability to grow. They also take bone scans to get your child's bone age and compare it to your child's calendar age. For instance, they tell you that although your child's calendar age is 8, their bone age is only 4. They do that periodically as they provide your child's medical care.

They put you through this little speech about how tall your child is likely to get while taking growth hormone. At that time, I believe 5' 6" was considered satisfactory for a boy and you smile because you're grateful for even that. The honest reputable ones also make a point to tell you that they don't do it for "cosmetic" reasons. While I'm sure there probably are a few who are willing to supply hormone for purely cosmetic reasons, I never met them. Also, I don't know what the price of growth hormone is now, but last I knew the price was prohibitive for most of us. And the last I knew, insurance companies didn't care whether your child grew or not.

Ashley's parents put her through major surgery (the hysterectomy). While I can understand and sympathize why they did it, this is not something I would ever choose to do. If it was me, I would probably fill out the paper work for a do-not-resusitate order and no extreme measures and make her comfortable for as long as possible.

As far as Ashley and bedsores is concerned, as you age your skin thins. Eventually Ashley will get bedsores. Its just a matter of time.

Please don't tell me what I know or don't know.

[Nobody]

43. The person who makes the decision should be the one who lives with it

In this case the parents are living with their decision for their daughter. No complete stranger is waltzing in, ordering the family to select Option X and then waltzing away, leaving them to deal with the consequences. Their daughter can't decide for herself, the family is caring for her, and they get to decide.

So many of the Antis, whether they're Anti abortion, Anti stem cell research, Anti this or that, have absolutely no stake in the decision. They never have to even see the consequences of choices they make for others let alone live with them.

Who am I to judge? I'm not the one who will be caring for Ashley. I will never even meet Ashley. The decision is not mine to make.

[pnwmom]

48. Great post, Nobody.

Well said.

How would you respond to the person who told me that giving families this privacy would be similar to allowing them the privacy to abuse and molest their children?

[Nobody]

54. Thanks

To answer your question, or at least try to: I am very much against causing misery. There is no similarity between parents doing what they think is the right thing that would make their child happier in the long run and parents who don't have the patience or the skills necessary to make good parents.

Abuse is not a choice on anyone's part, not the abuser and most certainly not the child being abused. Molesters find children sexually irresistable and will never stop unless criminal charges are brought and they get treatment. Many of these abusers were themselves abused. We all suffer from a sexual abuser. They don't stop at one kid and the next one may be yours, we're constantly being warned. Public safety is at stake. Whose safety? All of us and our children.

No similarity at all between loving parents of a developmentally challenged child wanting to keep her at home and someone who can't stop themselves from abusing children.

I have to go to work, I'll check back later.

[NoSheep]

69. Ditto. Great post.

[Warren Stupidity]

53. Did anyone on DU actually condemn these parents?

Or is this a hypothetical situation? This is a difficult case and I can understand why many people would be uncomfortable with the parent's decision here, but I would be surprised by condemnation. That seems a bit strong. So do you have a real live and kicking DU pro-choice person who is out here condemning the parents?

[pnwmom]

57. Not hypothetical, though I can't be sure they are pro-choice.

Here's the thread:

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=364&topic_id=3036388&mesg_id=3036388


And some of the comments:

"And when her parents die of old age., . taxidermy."

“the parents are totally mental. . . this course of treatment . . . is just sick.”

“bonzai babies”

“omg how horrible . . . Is this about HER, or about THEM?”

“This crosses the line of responsible and ethical medical care.”

“holy fucking meeeping miffy on a merry go-round! that is just plain sickening.”

[Kerrytravelers]

81. deleted.

I find the thread in the link so upsetting. I had a comment, but I just want out of the conversation. I have worked with Severely Disabled children in my Special Ed classrooms. There is a difference in having an opinion and having actually been in the trenches with the children.

[pnwmom]

89. I only spent a summer as a volunteer working with patients

less disabled than Ashley. But I saw enough to be very reluctant to judge parents like hers.

[Kerrytravelers]

92. I've worked with kids like Ashley. It gives perspective on the situation.

[Vinca]

55. Isn't the difference obvious?

A child is a person with rights - a fetus isn't.

[OmmmSweetOmmm]

56. Did I miss the thread where people were condemning the parents? nt

[pnwmom]

58. Apparently you did.

Here's one:

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=364&topic_id=3036388&mesg_id=3036388

[OmmmSweetOmmm]

98. Thank you for the link. Going to read it in a bit! nt

[mondo joe]

59. Completely unrelated. Abortion right is based on the right over your own body

- not over the rights of someone else's body.

Once it's OUT of the mother's body it is it's own entity.

[pnwmom]

62. It's related in that it concerns questions of when outsiders

should be interfering with a person or family's private decision on medical care. Yes, the child is outside of the mother's body now, but who better than the parents to be making the medical decisions for her?

Based on some of the reactions in another thread, I think that a number of DU'ers would say that the parents should not have been allowed to make this decision.

[mondo joe]

63. Incorrect.

As an individual, Ashley has her own rights. Her parents have the right to make medical decision for her - TO A POINT. Just like any other child.

This is not related to abortion.

[pnwmom]

70. That's your opinion. Here's another:

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=364&topic_id=3038735&mesg_id=3038867

And another:

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=364&topic_id=3038735&mesg_id=3038876

[rexcat]

93. Since Ashely has the mental capacity of a three year old...

the parents are obligated to make all of her medical decisions for her, hopefully in Ashely's best interests. A child does not have the right to assent for experimental medical treatment until they reach certain cognitive level, which Ashely will never attain (from what has been said of her). Parents can permission for experimental treatment of a child but can't consent. To consent implies a legal ability to understand what the treatment options are and in this case Ashely will never be able do. In most states children can assent to experimental medical treatment when they reach the cognitive age of 5 or 6 years. As the child increases their reasoning power, hopefully, with age (life experiences, etc.) they have more control over their medical care with certain limitations. Note I say cognitive because physical age and cognitive age can and are different for every child. Only adults can consent to treatment with the exception of an emancipated child which a court of law has to confer to the child. One can consent to procedures in most states at the age of 18. As far as standard of care treatment the parents have the overriding responsibility of minor children and can over ride the child's wishes unless a court of law intervenes.

What appears to be important here is this is not "standard of care" for Ashely, hence an ethical committee interceded in the matter. Most ethical committees are run by the institutions "Institutional Review Board" (IRB). In most cases there are medical doctors, ethicists, lay people and clergy on the committees. I am always perplexed that someone from the clergy is on every IRB but that should be for another discussion.

This issue is wrought with angst for the parents, the ethical committee and the community as a whole. These are tough decisions, as they should be. Once they become easy our society is in trouble. Hopefully the parents have made a wise decision for Ashely. We will never know for sure.

[mondo joe]

94. Her parents have the right and responsibility to make her medical choices - but they

ARE subject to challenge, on the principle that the child has her own rights.

An ethics committee was involved here - which is all the more reason to expect there to be disagreement and at least discussion about the issue.

[rexcat]

101. I absolutely agree with you...

and discussions (not flame bating) on topics such as this are important. These are difficult subjects for people to discuss in a rational manner. This immediately goes to the visceral level. I do have concern over the original poster's tenor in the post. My perspective of the original poster's comments somewhat confrontational.

My reason for the post was also to inform, in a limited way, some of the legal issues with informed consent and who can give that consent for medical treatment. We could discuss this issue for hours and just scratch the surface. I go to professional meetings for continuing education and these topics are my favorite just because there is no single correct solution. Again, they are complex and different people have different prospectives. What I found interesting was several posters said that the committee was just physicians, which would be very unusual and not ethical in any manner. I bring this perspective because I work in the Pharma industry and am involved with human drug trails. We face similar situations on a regular basis.

The function of the IRBs or ethics committees is vital to protect human subjects and in this case the parents were trying to make an informed decision on what they wanted done for their daughter. It was also the obligation of Ashely's primary care physicians to ask for an ethics review prior to any treatments or surgeries the child might endure. I can only say that I am glad that I have not had to make this kind of decision for my children. I have also worked in pediatrics and families in similar situations tend to divorce at a rate of 80+%.

[Pithlet]

72. Except parents do not have the right to do whatever they please.

Even when it comes to medical decisions. Children have their own individual rights, even when it comes to their bodies. They don't have the right to make decisions that harm their children, even if there are doctors who are willing to go along with them. A woman having control over her own body does not extend to a parent having total control over the body of their own child. They simply don't have the same rights of control that a woman has over her own body. That is why child abuse and neglect are illegal. Questioning the ethics of a medical decision made by parents is not at all like telling a woman she cannot have an abortion.

I'm not taking either side on the Ashley issue as I'm not informed enough about it to have an opinion either way. I just think your argument equating it with the abortion debate is incorrect.

[pnwmom]

74. So it doesn't seem odd to you that the same person

could be perfectly comfortable defending the right of a person to have a late-term abortion of a healthy fetus,
and yet condemn these parents for measures they took to improve the health of their disabled child?

I am pro-choice but not because I think an 8 month fetus is radically different than a 1 day old baby. It's because I think it's a decision that ultimately should only be made by the woman involved.

And in Ashley's case, I think only her parents and doctors should be involved.

[mondo joe]

77. Not odd AT ALL. The same right that protects a woman's right to abort also

protects Ashley.

These are not at odds - they are in alignment.

[pnwmom]

80. I don't see how it protects Ashley.

Unless you think that withholding beneficial health care is to her advantage.

The doctors say that by weighing significantly less she will be easier to move and will have fewer bedsores, bladder infections, lung infections, etc. She will be able to be lifted by a single person and not have to be turned in bed with ropes and joists.

And her parents say they will be able to care for her on their own rather than institutionalize her.

[mondo joe]

83. Simple: her parents are not HER. Their decisions can be called into question and

can be challenged. Ashley has her own right to medical care aside from her parents, just as a woman has a right to HER own medical care if she chooses to abort.

That this treatment is to her benefit is a judgment call by not her but her guardians, and as such is subject to challenge.

[pnwmom]

85. I agree it's subject to challenge. But are you personally objecting

to the decision they made. And if so, why?

[mondo joe]

88. I have a tenatative objection, pending more information.

But my objection bears no legal weight - it's purely opinion.

That objection is based on their choice to use the most radical intervention for comfort. But that's just a tentative objection.

It's certainly a thorny issue or it wouldn't have required the ethics panel.

[Pithlet]

82. Not at all. Because the issues are entirely separate.

I'm not saying I disagree with you about the decisions that Ashley's parents and doctors are making. I don't know enough about it. I barely glanced at the other thread, and didn't read the article at all. I'm just saying that people who disagree with you on this issue aren't necessarily at odds with their views on abortion. They could be indeed be wrong in their assessment of the situation. It still doesn't clash with their views on abortion.

In other words, it's not anyone's business what I do with my own body. That doesn't extend to my child. It's possible to be pro-choice AND pro child-services, for example. Children have their own rights that can be violated by their parents, and it's okay to step in on behalf of that child. Even in matters of medical decisions. It's perfectly all right to be concerned about the welfare of another person's child and be pro-choice, and there is no conflict there, even if you disagree that there's reason to be concerned. There is a big difference between "You can't do that to your own body" and "You can't do that to your child".

[pnwmom]

86. Okay. So how do you distinguish the rights of the parents in this case

and the rights of the husband in the Terry Schiavo case?

Are you on the side of those who thought the state should have been interfering in the Schiavo case?

[mondo joe]

90. The Schiavo case was challenged and upheld. Consistently.

The same could happen here.

It was within the scope of the law that the Schiavo case be challenged, just as this could be.

[Pithlet]

97. They both have similar rights. Neither have anything to do with abortion.

They're both in charge of making decisions for a person who is incapable of making them for themselves. That gives neither of them carte blanch to do whatever they want with that person. I don't think either case has anything to do with being pro-choice. In fact, I can easily see a person coming to different conclusions with respect to both those cases, and still not be at odds with their position on abortion in any way. Again, I'm not arguing with you on your position on whether the parents are right or wrong. I'm just saying it has nothing to do with abortion, because personal autonomy doesn't extend to any other individual. I can harm myself. I can't harm my child. That's what it boils down to. Neither the Schiavo case or the Ashley case deals with personal autonomy the way the abortion issue does.

[noonwitch]

64. They should get her a hysterectomy, instead

Yet I do understand why they desire to do this. They want to prevent her from being hurt by predators, which can happen whether she gets this treatment or not. They want her to avoid menstruating, which will scare or confuse her. But most of all, they want to make sure she never gets pregnant, has to deliver a child, and give that child up either to her family to raise, or for adoption. The last two can be accomplished with a hysterectomy.

[pnwmom]

75. They did get her a hysterectomy, as well.

The doctors agreed to that because it is impossible for the girl to ever have consensual sex, given her lack of brain development.

The other measures were taken because they and their doctors believed they could improve her health and comfort, and so that she would be small enough that the parents could continue to care for her at home as long as possible.

[noonwitch]

99. I worked with a kid who was in a similar condition

I recognized that at some point, she would likely have to live in adult foster care, because she was going to be tall and difficult to manage. But I worry about women in those situations-there are predatory people everywhere, and women who can't talk and can't understand sexual situations are vulnerable.

I can see the parents' thinking, but it seems sort of like foot-binding in a way, to prevent her from actually growing and keep her perpetually child-like in stature-there's something just a little creepy about that to me.

[gollygee]

84. It's the family's business, not my business

If they consulted with doctors and together decided this was best in this case, I'm not going to second-guess that.

[alcibiades_mystery]

95. WTF are you even talking about?

THis has nothing to do with abortion whatsoever.

What a stretch.

[pnwmom]

103. I'm not saying that it "has to do with abortion."

But I wonder why aborting -- i.e., killing -- a healthy or unhealthy fetus would be the mother's choice, and therefore acceptable to most of us; and yet taking medical measures to hopefully extend a child's life and comfort, would not?

[Name removed]

104. Deleted message

Message removed by moderator. Click here to review the message board rules.

[colinmom71]

96. Invalid analogy....

I'm wondering why a DU'er who believed in pro-choice -- including, if necessary, late term abortions -- would condemn these parents for making medical decisions that could make it easier to care for their child, and increase her comfort.

Why is it okay to abort a 5 month fetus with Downs syndrome (or an older fetus for whatever reason), but not okay to take medical measures that -- by stunting her growth -- may improve the care of a child like Ashley (who must be tube fed and is far more difficult to care for than a child with Downs)?

The choice to abort a pregnancy where a genetic disorder is detected during pre-natal testing is about choosing whether to give birth to and/or be the parents of a child with special needs. Not everyone feels their family can handle the emotional, mental, financial, and other tolls on daily life functioning that having a special needs kid presents. And if they chose to abort, they must do so before the fetus is medically viable. Usually the maximum age that the law and safe medical practice allow for is aborting by 24-26 weeks into the pregnancy (depending on the physician's assessment of the fetus's viability status). It is not until the gestational age of 26 weeks that fetuses are capable of sensing pain, of having the beginnings of sentience and self-awareness, and of being able to survive outside the womb.

BTW, the better term for an abortion in the second trimester would be a "later abortion" rather than "late term", as the latter implies that the fetus is late into the pregnancy (third trimester and usually viable by this point), whereas the former term describes the abortion as taking place later into the pregnancy than the vast majority of first trimester procedures (ie. - during the second trimester and pre-viability).

However, the parents in the situation in this blog do not compare at all to aborting for genetic issues, as their daughter attainded a full term fetal development and was born alive (independently able to live apart from the natal environment). They have also chosen to remain the parents and caregivers to their daughter through her life, unless circumstances force them to make alternative arrangements in the future. Granted, foster care or adoptive placement is notoriously difficult to find for children with special needs but it is an option for parents at any stage in their child's life. Heck, some states pretty much force parents into a no-win surrender of their parental role and rights in order to acquire residential services if that is felt to be in the child's best interest...

The other thing that disturbs me about what these parents are consenting to for their daughter is that there is no proven basis for the validity of their argument that these surgeries and procedures will in fact have an overall beneficial effect upon her health. It amounts really to medical experimentation and guesses (albeit educated ones). And I have a hard time buying the argument that they are preventing future suffering by subjecting her to numerous surgeries and procedures. Surgery is painful, even with good medicines to aleviate post-surgery discomfort. All this little girl now knows in her life is fear that the next time she's held or touched might be for yet another painful procedure.

The parents say they aren't doing this from a sense of shame at having a disabled child or from a fear of inconvenience. And yet, the article they cite at the bottom of the blog entry is pretty much focused solely on having to deal with caring for an adult sized body with mental impairments. I'm also rather creeped out at how they blocked off their own and their other children's faces in family photos so as not to seemingly be visually associated with Ashley. If they were concerned with medical privacy or publicity problems, they never would have published this blog to begin with, never mind offering photos of their daughter as well.

Either way, they've chosen this medical route for their daughter so I sincerely hope that it does ultimately wind up being to her benefit. As parents, it is their responsibility to make the choices they feel are best for their child and their family. And the only way that relates to abortions for fetal defects is that it's the responsibility and the right of parents to determine whether they can handle raising a child with extraordinary needs...

[pnwmom]

102. Actually, you made a point I was trying to get at, albeit clumsily.

"And the only way that relates to abortions for fetal defects is that it's the responsibility and the right of parents to determine whether they can handle raising a child with extraordinary needs..."

[donheld]

106. Walk a mile in their shoes before you make a judgment

Never has it been more relevant than in this case. It's real easy to sit in judgment not facing the same situation.

[MonkeyFunk]

107. What does this story have...

to do with abortion?