This is a very personal issue for me to discuss. I have a very dear and near friend with a daughter that requires 24/7 toddler care for the rest of her life. I feel no one person should ever judge what one does to accommodate the needs of a family that cares for someone with such great needs. The demands on how the family travels, works, and how they live their daily lives change forever. Now in saying this,I don't feel that parents with special needs children should be able to what ever they want. In this case, I agree with what the parents chose to do with medical alterations. Making it easier to care for her and relieving some physical fatigue on their part. By doing these things, it will make it easier to allow her to be a big part of the family when it comes to going out for social events. Making her more mobile will increase more social interaction which will give her more stimulation to the world around her. I think by doing these medical alterations brings more dignity to her life because the family will be able to take her out in a easier fashion making her a part of the family and the world she lives in.
I agree with you, it's easy to say as a bystander what our opinions are but quite different when we actually experience it for ourselves. I'm sure your friend would have great input on this topic. I'm sure any new therapies or technology that will improve the quality of life for their loved one would be considered.
It is so easy for someone else to sit back and say what the would do. Well if given this situation about my child I am not sure what I would do. I know I would want what is best for my child. I would not want my child to be in pain, would not want her to have medical issues (circulatory) issues that could be prevented. If her functional ability would only be that of a three month old I would want to be able to hold her physically like you would a three month old to comfort and nurture them. God bless your friend and her family for what they have to go through on a daily basis.
As a parent I am trying to remember what my children were doing at three months. They know their parents at this age and respond with smiles, verbalization, follow objects, etc. I would also want to be able to have that physical contact and ability to comfort my child as you say .It makes me a little sad to think of what this child would understand if she could not be loved and comforted by her parents.
I feel the parents of this child are trying to protect her against possible harm in the future, although, if more information on the family were made available, it may prove the parents were acting in their own best interests, not the child's. If this child were unattended or unintentionally placed in a position that could leave her vulnerable,harm could come to her in the form of sexual assault, traumatic stress and possible pregnancy. With what is presented in the case, it appears there is sufficient evidence that these interventions will improve the child's quality of life.
I agree they are trying to protect her from harm as well as trying to make the best life for her in their family. The choices they made are hard ones to deal with but I feel they made the right choice for all involved.
So sad to consider that someone would potentially take advantage of a disabled child. I know it's in the news frequently, but it's not something we typically think of. It would be way more tragic to have this child be taken advantage of and end up pregnant! What a great point, but sad to consider.
So it appears OK to do this to a 9 year old child. Why wait until she is 9? Why not do it while she is an infant or toddler? If we are keeping the child's best interests involved wouldn't it be better for her to remain in the body of a 4 year old? I'm just trying to look outside the box.
Narcan should NOT be available over-the-counter without a prescription. It is a way of saying that it's okay for drug addicts to continue to overdose because someone close to them can reverse their overdose and save their life. It is not okay to do drugs, it is illegal and if you choose to do so then that's the gamble you took from the first time you ever took the drug. You have to be responsible for yourself and accept consequences for any behavior that you take on, good or bad.
Point well taken; if they are required to have a prescription, there is a slight chance that will make a difference. The problem is, they have a copay with the doctor and probably won't go. I feel we need to start educating early elementary aged school children. I have started with my second graders and the older ones have heard it again and again. They need to see the real effects that drugs have on users.
I agree with what you are saying about each person has to be responsible for their self but, lets face it drug users are already not responsible. So until the issues of drug use gets better I feel we have to help. I know I would want the help if one of my family members got caught up in the wrong group of people. It can have to the best of families.
I completely agree! I think that if people were held more accountable for their actions then less people would do drugs because they know they could die and there is not a medicine readily available to help correct the problem. Doing drugs is definitely a gamble that is not a smart one to take!!!
Enabling is such a bad thing for addicts. Our instincts as family is to try and help but in the long wrong we would only inhibit the addict's recovery. They must become responsible for their actions and hit "rock bottom." Heroin is definitely not discriminatory in this region, I definitely think early education is very important! Adolescents certainly believe they are invincible and need real life examples of those close to them that are suffering. This would seem to paint the realistic picture for them, however we know it's certainly not just their age group that this is affecting.
We currently don't have the resources to help the people that want help in this area. These people are sometimes on waiting lists for rehabs for months and months. While they wait they have no help with becoming clean and they have lost their willpower to just choose not use heroin anymore. There are many success stories from heroin addicts. I don't believe that having narcan available will make all addicts think they just have a free pass. Just like having plan b available at pharmacies without a prescription doesn't make all people having sex less responsible.
Today, I saw this article about a man who has overcame a heroin and alcohol addiction. He has survived 18 overdoses. He has been able to reach other people and rebuild a relationship with his family.
I agree that narcan is a coating to the problem but I see daily parents hopeless and helpless about their Childs addiction. Words can't explain. Addiction to herion in this region doesn't descriminate. I pray daily that I will not have to battle this fear with my children. So, I question myself, If that was my child that was an addict would I grab the narcan that my pharmacist gave me without a prescription? Would I try rescue breaths ( because I am a nurse and know how to do) until medics arrived after I caled 911? I would absolutely the first intervention to save my child!;)
I agree that narcan is just a band aid for the problem at large. We need to educate people of all ages about the dangers of heroin abuse. We see it daily in the emergency room and it isnt a pretty sight. People getting droped off at the door with needles still in their arms and they are blue. Their so called friends leaving them after we have drugged them inside and revived them. There is always 2 sides to the story and even though most of the time the patients arent appreciative that we have saved their life the family members are. Most patients deny that they were even doing anything to cause them any harm. But having narcan avaliable to family members I think is a must. I have held the hand of the mother who's son just got out of rehab 2 weeks prior and came into the er with heroin overdose and did not survive. The mother blamed herself, why couldn't I have done more, why wasn't I there. I think that if any member of my family was an addict I would want the option to have the narcan so that if something did happen I would be able to save my family member. I agree that we need to start education at the middle school age children. That seems almos impossible that children so young are affected but they see the news and they may witness first hand drug abuse. Part of the problem is that when peopel to want help they cant find it. There aren't enough drug rehab facilities or it cost an arm and a leg for you to go and in most cases the family members are they ones paying for rehab so they are stressed even more. I don't really know what they right answer is but I think I would sleep better at night if I narcan for my family member
Having narcan available to families is just a Band-Aid to the current situation, but it's also a way to prevent death until better treatment facilities can become available. Unfortunately I have had to deal with the effects of heroin in my own family and it was at the start of the epidemic when it was almost unheard of. As a bystander I wish narcan was available then. It would have in no way fixed the problem, but it may have prevented death until rehabilitation could occur.
I feel that the parents in this situation are doing what is in the best interest for their child. In this child's situation of being handicap, having these procedures electively done will most likely make this child's life a little easier for them and for the parents involved. I do think this is morally okay to go on with this. On this flip side these are very hard decisions to make if in this situation. I could not imagine.
I agree with you Andrea. You never know what you would do until your in that situation. I'm just not so sure about the moral implications of medically changing this child. She is 9 years old. Who's to say she is going to get taller or fatter? I'm just so undecided about this topic.
I agree with you Andrea. sounds like they are trying to make the best decisions out of a very stressful and draining situation. Per the information we were given it sounds like they do try and take her places and make her involved in the world as much as possible. Having to worry about some of the hormonal changes she will have if they didn't do the procedures I think would make her more house bound and cause the family more stress. It is a hard decision to make and I don't know if I would make the same one or not. But it is not for me to judge what others have done. If they were given all the information from the medical team then I think they did what was best for them.
They parents are definitely trying to love and protect their child the best way they know. What would the alternative be n this case? place her in a group home, or skilled nursing facility? They are attempting to keep their family intact and give her as much interaction as possible.
I believe that Ashley's parents and doctors made a decision in regards to her treatment that was in her best interest. It does seem to be a controversial issue, but I don't feel we can judge their decision if we have never been in that situation before. I can't imagine the effect caring for a special needs child can have on one's family. At this point, I believe it is safe to say Ashley is not capable of an independent relationship with a boyfriend, much less becoming a parent. Since she is not capable of an autonomous decision, I believe her family is definitely acting in her best interest. Her dependent care will be for as long as Ashley lives, and this is one less aspect of her care that can be safely eliminated. This is going to make it easier for Ashley to have continued and improved quality of life, whereas the other may require more care and limit the families abilities to get out socially with her. 2. I do not feel this decision was to make it more convenient for her caregivers. This question would not even be considered if it were something that was only to promote Ashley's quality of life. I think it is selfish of society to presume, without all the details, that their convenience would be the basis of their decision. It is so frustrating that as a whole, our society is so quick to judge and yet so uninformed. I feel they are morally doing it for the right reasons, although details are not given. As the saying goes when you are pointing a finger at someone, there are 4 pointing back at yourself. 3. I do not feel in this case, it is acting contrary to human dignity. If Ashley had a mentality to comprehend and was greater than that of a 3 month old, then it would be a different scenario to consider. If her dignity were in question, and if she had her own thoughts and feelings in the matter, then absolutely her input would be valid and should be considered. 4. I would consider this an appropriate intervention in her medical care given the circumstance. Ashley has a chronic illness and will require managed care for the duration of her chronic illness. Her doctors are managing her care through each stage of her development and this is considered part of that care. The choices are ultimately up to the families, but the doctor can present current medical technology and inform them of potential choices to consider as she develops.
I feel that Ashley's parents and doctors did what was in the best interest of Ashley. A smaller size would not only make it easier for Ashley to get the care that she needs, but it may prevent injuries as well. If Ashley is smaller, she is able to repositioned easier which will prevent bed sores. I'm not sure that "convenience" is the right term to be used in the parents decision for Ashley's treatment. I do not believe they were doing it for themselves, they were doing it for their family. I think that this is appropriate medical practice in Ashley's case.
I think they definitely benefited from having the procedures and therapy. That is not a bad thing. If it keeps the family as a whole healthy and intact, that in turn is added benefit for Ashley. I do not think their first thought was how they themselves would benefit.
As stated in the case Ashley's parents were motivated by the girls best interest in allowing this treatment so that they could continue to care for her and give her the best life possible. It is very easy for the everyone else to say it is wrong, but we are not the ones whom have a child with this condition and that will require dependent care for the rest of her life. If by doing this treatment will help her live a longer with less complications, still be able to be held and moved about easily and be able to be included and taken out socially with her family then that is what they should do. I don't think that this is against human dignity. It would be undignified for this child to not be able to be part of her family and for her parents to be unable to care for her physical needs. It would be undignified for her to be in pain if that could be prevented by the procedures that the family were given the options to do
I think Ashely's parents and doctors were looking out for the best interest of Ashley. It's hard to say what I would do, but I think I would do the same. If this helps her parents and caregivers take better care of her, it only makes sense, and will come full circle and benefit everyone involved. I don't think this is against human dignity. Letting Ashley suffer with pain and not being apart of outings and special events with her family would be against human dignity. Intervening medically to maintain her physically and psychologically is justified.
Here's a left field thought, not one that I necessarily agree with but a controversy none the less. If it is OK to medically, surgically, physically change the child then why not all physically handicapped children? Where do we draw the line? I know there is a saying that God only gives us what we can handle. And miracles do happen! What then with this little child? We have condemned her to a stagnating life. Life is about change and coping with change and growing, as a family. Adversity makes us stronger! I know that this case is special. It reminds me of the case of the Patient with locked in syndrome. What if this 9 year old girl who can't talk or walk or turn over could be locked in. What then have we done? I again will state that I don't agree with all my content here but....what if?
In this case I feel the parents are acting in the best interest of their child. Her mental capacity dictates the treatment option. Putting a child with the mental functioning of a three month old through the process of physical maturation seems somewhat cruel to me. I don't think that convenience for the parent comes into play at all here. If it did, they could simply have placed Ashley in a facility. This does not compromise her human dignity as she gets to remain in her home , surrounded by her parents who want to give her the best life possible and provide mental and physical stimulation for her though outings, and physical contact. I think the intervention is appropriate in her case as it is giving her the opportunity to remain with her parents.
I believe that the decisions Ashley’s parents and physicians made for her were completely right. But for argument sake, where do you draw the line for what parents/guardians’ can consent to? We have previously discussed that not all physicians act in a morally correct way. Parents of gymnasts could ask for hormones to keep their daughters smaller in stature. Parents of girls that are involved in pageants and/or modeling could find plastic surgeons to perform surgery on their daughters. Parents could also find surgeons to perform surgeries on their children to make them infertile.
I imagine there are parents who have been able to convince a physician to order hormones to delay puberty and feel fairly certain that young models have been subjected to plastic surgery. I worked in home care while in college (the first time). One of the clients I visited was a 9 year old with cerebral palsy. Her grandmother was her guardian and this young girl was bedridden. She could sit with assistance and had a very small vocabulary. Her grandmother talked to me on several occasions about having a hysterectomy performed on the child before puberty. I was probably 20 years old, an aide and had very little insight to offer. I remember telling her she should talk to the pediatrician. Today, I would give her more encouragement that it was ok to broach subject. She loved the child and had her best interest at heart.
I believe Ashley's parents did the right thing. I do agree with the fact that having her small makes caring for her a physically easier task. In the long run, one would have to think it will decrease risk of skin breakdown from inability to turn her frequently, easier to change diapers and provide greater ease, as the parents stated, to be able to continue to keep her "mobile". If a family is restricted because of inability to take Ashley out of the home with ease, that may inhibit coping skills and put the family at risk for breakdown. The case does not mention if Ashley has any other siblings, but imagine it being a struggle to get one child out of the house while another has typical needs and desires. Her condition is not hers alone, but her entire family.
The decision that Ashely's parents made was the best one for them and for Ashely. I could not imagine the 24/7 care that she is going to require for the rest of her life. If she would continue to grow and become the size of an adult it would be much harder on everyone involved to give her the care she deserves. I believe that she would be neglected more and not experience everyday life if it were so hard to get her out and about.
I can see Ashley's parents perspective. It is not said in the article how old she is expected to live to but imagine trying to take care of an adult sized toddler when you are in your sixties. I think that the decision was not solely based on Ashley's future needs but I cannot fault the parents. The fact of the matter is they are responsible for taking care of their daughter and will have to do so until they physically cannot. Helping to halt the maturation process may help her get the best loving care that she may not be able to receive if she were adult sized with adult sized issues.
This is a very personal issue for me to discuss. I have a very dear and near friend with a daughter that requires 24/7 toddler care for the rest of her life. I feel no one person should ever judge what one does to accommodate the needs of a family that cares for someone with such great needs. The demands on how the family travels, works, and how they live their daily lives change forever. Now in saying this,I don't feel that parents with special needs children should be able to what ever they want. In this case, I agree with what the parents chose to do with medical alterations. Making it easier to care for her and relieving some physical fatigue on their part. By doing these things, it will make it easier to allow her to be a big part of the family when it comes to going out for social events. Making her more mobile will increase more social interaction which will give her more stimulation to the world around her. I think by doing these medical alterations brings more dignity to her life because the family will be able to take her out in a easier fashion making her a part of the family and the world she lives in.
ReplyDeleteI agree with you, it's easy to say as a bystander what our opinions are but quite different when we actually experience it for ourselves. I'm sure your friend would have great input on this topic. I'm sure any new therapies or technology that will improve the quality of life for their loved one would be considered.
DeleteIt is so easy for someone else to sit back and say what the would do. Well if given this situation about my child I am not sure what I would do. I know I would want what is best for my child. I would not want my child to be in pain, would not want her to have medical issues (circulatory) issues that could be prevented. If her functional ability would only be that of a three month old I would want to be able to hold her physically like you would a three month old to comfort and nurture them. God bless your friend and her family for what they have to go through on a daily basis.
DeleteAs a parent I am trying to remember what my children were doing at three months. They know their parents at this age and respond with smiles, verbalization, follow objects, etc. I would also want to be able to have that physical contact and ability to comfort my child as you say .It makes me a little sad to think of what this child would understand if she could not be loved and comforted by her parents.
DeleteI feel the parents of this child are trying to protect her against possible harm in the future, although, if more information on the family were made available, it may prove the parents were acting in their own best interests, not the child's. If this child were unattended or unintentionally placed in a position that could leave her vulnerable,harm could come to her in the form of sexual assault, traumatic stress and possible pregnancy. With what is presented in the case, it appears there is sufficient evidence that these interventions will improve the child's quality of life.
ReplyDeleteI agree they are trying to protect her from harm as well as trying to make the best life for her in their family. The choices they made are hard ones to deal with but I feel they made the right choice for all involved.
DeleteSo sad to consider that someone would potentially take advantage of a disabled child. I know it's in the news frequently, but it's not something we typically think of. It would be way more tragic to have this child be taken advantage of and end up pregnant! What a great point, but sad to consider.
DeleteSo it appears OK to do this to a 9 year old child. Why wait until she is 9? Why not do it while she is an infant or toddler? If we are keeping the child's best interests involved wouldn't it be better for her to remain in the body of a 4 year old? I'm just trying to look outside the box.
DeleteNarcan should NOT be available over-the-counter without a prescription. It is a way of saying that it's okay for drug addicts to continue to overdose because someone close to them can reverse their overdose and save their life. It is not okay to do drugs, it is illegal and if you choose to do so then that's the gamble you took from the first time you ever took the drug. You have to be responsible for yourself and accept consequences for any behavior that you take on, good or bad.
ReplyDeletePoint well taken; if they are required to have a prescription, there is a slight chance that will make a difference. The problem is, they have a copay with the doctor and probably won't go. I feel we need to start educating early elementary aged school children. I have started with my second graders and the older ones have heard it again and again. They need to see the real effects that drugs have on users.
DeleteI agree with what you are saying about each person has to be responsible for their self but, lets face it drug users are already not responsible. So until the issues of drug use gets better I feel we have to help. I know I would want the help if one of my family members got caught up in the wrong group of people. It can have to the best of families.
DeleteI completely agree! I think that if people were held more accountable for their actions then less people would do drugs because they know they could die and there is not a medicine readily available to help correct the problem. Doing drugs is definitely a gamble that is not a smart one to take!!!
DeleteEnabling is such a bad thing for addicts. Our instincts as family is to try and help but in the long wrong we would only inhibit the addict's recovery. They must become responsible for their actions and hit "rock bottom." Heroin is definitely not discriminatory in this region, I definitely think early education is very important! Adolescents certainly believe they are invincible and need real life examples of those close to them that are suffering. This would seem to paint the realistic picture for them, however we know it's certainly not just their age group that this is affecting.
DeleteI can see both sides of this argument.
DeleteWe currently don't have the resources to help the people that want help in this area. These people are sometimes on waiting lists for rehabs for months and months. While they wait they have no help with becoming clean and they have lost their willpower to just choose not use heroin anymore. There are many success stories from heroin addicts. I don't believe that having narcan available will make all addicts think they just have a free pass. Just like having plan b available at pharmacies without a prescription doesn't make all people having sex less responsible.
Today, I saw this article about a man who has overcame a heroin and alcohol addiction. He has survived 18 overdoses. He has been able to reach other people and rebuild a relationship with his family.
http://elitedaily.com/news/world/homeless-man-survived-sleeping-women-reveals-life-like-now/1035575/
I agree that narcan is a coating to the problem but I see daily parents hopeless and helpless about their Childs addiction. Words can't explain. Addiction to herion in this region doesn't descriminate. I pray daily that I will not have to battle this fear with my children. So, I question myself, If that was my child that was an addict would I grab the narcan that my pharmacist gave me without a prescription? Would I try rescue breaths ( because I am a nurse and know how to do) until medics arrived after I caled 911? I would absolutely the first intervention to save my child!;)
ReplyDeleteI agree that narcan is just a band aid for the problem at large. We need to educate people of all ages about the dangers of heroin abuse. We see it daily in the emergency room and it isnt a pretty sight. People getting droped off at the door with needles still in their arms and they are blue. Their so called friends leaving them after we have drugged them inside and revived them. There is always 2 sides to the story and even though most of the time the patients arent appreciative that we have saved their life the family members are. Most patients deny that they were even doing anything to cause them any harm. But having narcan avaliable to family members I think is a must. I have held the hand of the mother who's son just got out of rehab 2 weeks prior and came into the er with heroin overdose and did not survive. The mother blamed herself, why couldn't I have done more, why wasn't I there. I think that if any member of my family was an addict I would want the option to have the narcan so that if something did happen I would be able to save my family member.
DeleteI agree that we need to start education at the middle school age children. That seems almos impossible that children so young are affected but they see the news and they may witness first hand drug abuse. Part of the problem is that when peopel to want help they cant find it. There aren't enough drug rehab facilities or it cost an arm and a leg for you to go and in most cases the family members are they ones paying for rehab so they are stressed even more. I don't really know what they right answer is but I think I would sleep better at night if I narcan for my family member
Having narcan available to families is just a Band-Aid to the current situation, but it's also a way to prevent death until better treatment facilities can become available. Unfortunately I have had to deal with the effects of heroin in my own family and it was at the start of the epidemic when it was almost unheard of. As a bystander I wish narcan was available then. It would have in no way fixed the problem, but it may have prevented death until rehabilitation could occur.
DeleteI feel that the parents in this situation are doing what is in the best interest for their child. In this child's situation of being handicap, having these procedures electively done will most likely make this child's life a little easier for them and for the parents involved. I do think this is morally okay to go on with this. On this flip side these are very hard decisions to make if in this situation. I could not imagine.
ReplyDeleteI agree with you Andrea. You never know what you would do until your in that situation. I'm just not so sure about the moral implications of medically changing this child. She is 9 years old. Who's to say she is going to get taller or fatter? I'm just so undecided about this topic.
DeleteI agree with you Andrea. sounds like they are trying to make the best decisions out of a very stressful and draining situation. Per the information we were given it sounds like they do try and take her places and make her involved in the world as much as possible. Having to worry about some of the hormonal changes she will have if they didn't do the procedures I think would make her more house bound and cause the family more stress. It is a hard decision to make and I don't know if I would make the same one or not. But it is not for me to judge what others have done. If they were given all the information from the medical team then I think they did what was best for them.
DeleteThey parents are definitely trying to love and protect their child the best way they know. What would the alternative be n this case? place her in a group home, or skilled nursing facility? They are attempting to keep their family intact and give her as much interaction as possible.
DeleteI believe that Ashley's parents and doctors made a decision in regards to her treatment that was in her best interest. It does seem to be a controversial issue, but I don't feel we can judge their decision if we have never been in that situation before. I can't imagine the effect caring for a special needs child can have on one's family. At this point, I believe it is safe to say Ashley is not capable of an independent relationship with a boyfriend, much less becoming a parent. Since she is not capable of an autonomous decision, I believe her family is definitely acting in her best interest. Her dependent care will be for as long as Ashley lives, and this is one less aspect of her care that can be safely eliminated. This is going to make it easier for Ashley to have continued and improved quality of life, whereas the other may require more care and limit the families abilities to get out socially with her. 2. I do not feel this decision was to make it more convenient for her caregivers. This question would not even be considered if it were something that was only to promote Ashley's quality of life. I think it is selfish of society to presume, without all the details, that their convenience would be the basis of their decision. It is so frustrating that as a whole, our society is so quick to judge and yet so uninformed. I feel they are morally doing it for the right reasons, although details are not given. As the saying goes when you are pointing a finger at someone, there are 4 pointing back at yourself. 3. I do not feel in this case, it is acting contrary to human dignity. If Ashley had a mentality to comprehend and was greater than that of a 3 month old, then it would be a different scenario to consider. If her dignity were in question, and if she had her own thoughts and feelings in the matter, then absolutely her input would be valid and should be considered. 4. I would consider this an appropriate intervention in her medical care given the circumstance. Ashley has a chronic illness and will require managed care for the duration of her chronic illness. Her doctors are managing her care through each stage of her development and this is considered part of that care. The choices are ultimately up to the families, but the doctor can present current medical technology and inform them of potential choices to consider as she develops.
ReplyDeleteI feel that Ashley's parents and doctors did what was in the best interest of Ashley. A smaller size would not only make it easier for Ashley to get the care that she needs, but it may prevent injuries as well. If Ashley is smaller, she is able to repositioned easier which will prevent bed sores. I'm not sure that "convenience" is the right term to be used in the parents decision for Ashley's treatment. I do not believe they were doing it for themselves, they were doing it for their family. I think that this is appropriate medical practice in Ashley's case.
ReplyDeleteI think they definitely benefited from having the procedures and therapy. That is not a bad thing. If it keeps the family as a whole healthy and intact, that in turn is added benefit for Ashley. I do not think their first thought was how they themselves would benefit.
DeleteAs stated in the case Ashley's parents were motivated by the girls best interest in allowing this treatment so that they could continue to care for her and give her the best life possible. It is very easy for the everyone else to say it is wrong, but we are not the ones whom have a child with this condition and that will require dependent care for the rest of her life. If by doing this treatment will help her live a longer with less complications, still be able to be held and moved about easily and be able to be included and taken out socially with her family then that is what they should do. I don't think that this is against human dignity. It would be undignified for this child to not be able to be part of her family and for her parents to be unable to care for her physical needs. It would be undignified for her to be in pain if that could be prevented by the procedures that the family were given the options to do
ReplyDeleteI think Ashely's parents and doctors were looking out for the best interest of Ashley. It's hard to say what I would do, but I think I would do the same. If this helps her parents and caregivers take better care of her, it only makes sense, and will come full circle and benefit everyone involved. I don't think this is against human dignity. Letting Ashley suffer with pain and not being apart of outings and special events with her family would be against human dignity. Intervening medically to maintain her physically and psychologically is justified.
ReplyDeleteI agree with your thoughts of outside outings and family events.
DeleteHere's a left field thought, not one that I necessarily agree with but a controversy none the less. If it is OK to medically, surgically, physically change the child then why not all physically handicapped children? Where do we draw the line? I know there is a saying that God only gives us what we can handle. And miracles do happen! What then with this little child? We have condemned her to a stagnating life. Life is about change and coping with change and growing, as a family. Adversity makes us stronger! I know that this case is special. It reminds me of the case of the Patient with locked in syndrome. What if this 9 year old girl who can't talk or walk or turn over could be locked in. What then have we done? I again will state that I don't agree with all my content here but....what if?
ReplyDeleteAnd another thought....Who will be the advocate for the child?
DeleteIn this case I feel the parents are acting in the best interest of their child. Her mental capacity dictates the treatment option. Putting a child with the mental functioning of a three month old through the process of physical maturation seems somewhat cruel to me. I don't think that convenience for the parent comes into play at all here. If it did, they could simply have placed Ashley in a facility. This does not compromise her human dignity as she gets to remain in her home , surrounded by her parents who want to give her the best life possible and provide mental and physical stimulation for her though outings, and physical contact. I think the intervention is appropriate in her case as it is giving her the opportunity to remain with her parents.
ReplyDeleteI believe that the decisions Ashley’s parents and physicians made for her were completely right. But for argument sake, where do you draw the line for what parents/guardians’ can consent to? We have previously discussed that not all physicians act in a morally correct way. Parents of gymnasts could ask for hormones to keep their daughters smaller in stature. Parents of girls that are involved in pageants and/or modeling could find plastic surgeons to perform surgery on their daughters. Parents could also find surgeons to perform surgeries on their children to make them infertile.
ReplyDeleteI imagine there are parents who have been able to convince a physician to order hormones to delay puberty and feel fairly certain that young models have been subjected to plastic surgery. I worked in home care while in college (the first time). One of the clients I visited was a 9 year old with cerebral palsy. Her grandmother was her guardian and this young girl was bedridden. She could sit with assistance and had a very small vocabulary. Her grandmother talked to me on several occasions about having a hysterectomy performed on the child before puberty. I was probably 20 years old, an aide and had very little insight to offer. I remember telling her she should talk to the pediatrician. Today, I would give her more encouragement that it was ok to broach subject. She loved the child and had her best interest at heart.
DeleteI believe Ashley's parents did the right thing. I do agree with the fact that having her small makes caring for her a physically easier task. In the long run, one would have to think it will decrease risk of skin breakdown from inability to turn her frequently, easier to change diapers and provide greater ease, as the parents stated, to be able to continue to keep her "mobile". If a family is restricted because of inability to take Ashley out of the home with ease, that may inhibit coping skills and put the family at risk for breakdown. The case does not mention if Ashley has any other siblings, but imagine it being a struggle to get one child out of the house while another has typical needs and desires. Her condition is not hers alone, but her entire family.
ReplyDeleteWell put. This is true that her condition effects everyone.
DeleteThe decision that Ashely's parents made was the best one for them and for Ashely. I could not imagine the 24/7 care that she is going to require for the rest of her life. If she would continue to grow and become the size of an adult it would be much harder on everyone involved to give her the care she deserves. I believe that she would be neglected more and not experience everyday life if it were so hard to get her out and about.
ReplyDeleteI can see Ashley's parents perspective. It is not said in the article how old she is expected to live to but imagine trying to take care of an adult sized toddler when you are in your sixties. I think that the decision was not solely based on Ashley's future needs but I cannot fault the parents. The fact of the matter is they are responsible for taking care of their daughter and will have to do so until they physically cannot. Helping to halt the maturation process may help her get the best loving care that she may not be able to receive if she were adult sized with adult sized issues.
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