17 different women, 36 crazy children, 0 babies in utero
Adventures, Advice and Questions from a group of Mormon women who met in Queens, NY and have now scattered all over the place.

Thursday, January 04, 2007

Surgery to stunt disabled girl's - ethical questions?

I came across this story today on CNN:

Surgery to stunt disabled girl's growth raises ethical questions

When I read the first few lines I initially thought: "Well of COURSE this is ridiculous - I am not in favor of this at all".

But then I read some more...and thought...

I don't know what it's like to have a disabled child, so it's not my place to say how I would or wouldn't care for them. The girls parents even write: ""Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."

What do you think?


  • I had the same reaction. After reading the story, there's no way I could decide whether or not those parents were right. Although, did you see the picture? That girl sure had a bright, intelligent, and aware look in her eyes.
    posted by Blogger annegb at 1/04/2007 07:37:00 PM  

  • I think that they have some very valid reasons for doing it. Is it ethical? I don't know. I'm not a caregiver to a special needs child. I am not in a place to judge them. I do have a friend who has a daughter that is very much like this young girl, and I can see how the challenges she faces on a daily basis now might be magnified 1000% when she gets older and bigger and heavier. I am sure that these parents thought long and hard about what they were doing before they did all of this.
    posted by Anonymous Anonymous at 1/04/2007 08:31:00 PM  

  • Sounds like a wise choice by the parents in my opinion.
    posted by Blogger Clark Goble at 1/04/2007 08:36:00 PM  

  • I did not read the article, just the headline. I am wondering how much it costs to do this, compared to outfitting your home for a heavier person.

    On Extreme Makeover Home Edition they installed a special person-mover and shower/wet room for a growing teenaged, disabled individual, that really helped the mom. There was also some sort of system involved to alert the mother if he had a siezure, so that she could sleep in her room after 15 years of sleeping in the bed with her boy. So...if I could afford the home improvements, I would go that route I think.

    I might also try to pay for a helper so that I could have a break.
    posted by Blogger Kage at 1/05/2007 05:45:00 AM  

  • I read about this yesterday as well. I think that the parents seem pretty logical in thier reasonings. I mean, in her condition it doesn't sound like she will ever have any of the normal cognitive evolving either. I don't really see anything wrong with what they did in her situation.

    But that is not to say this country doesn't need to improve the overall quality of care for the disabled. That's a more important issue to deal with on a broader level, and I don't think people should jump to any conclusions that surgeries like this can change the needs of the majority.

    Those who are full grown and disabled should be provided access and help in every way possible.
    posted by Anonymous Anonymous at 1/05/2007 07:48:00 AM  

  • I am just glad I don't have to make a judgement call on this one. And I hope I never have to make a decision like this one of any kind.
    posted by Blogger TftCarrie at 1/05/2007 08:09:00 AM  

  • I agree with Rachel. We need to seriously improve with our treatment of the disabled and help for their caregivers.

    While I don't know all the specifics in this case, and it seems like it's not a bad idea to keep her small, I tremble in fear that it will be taken as a precedent and permission for others to give medical treatment to somebody based on the interest of the caregivers instead of the patient. (even though this one seemed motivated by the needs of both)

    Also, I agree with Carrie. No way would I ever be able to make this kind of judgment call, and God willing, I'll never have to.
    posted by Blogger The Wiz at 1/05/2007 08:16:00 AM  

  • "I tremble in fear that it will be taken as a precedent and permission for others to give medical treatment to somebody based on the interest of the caregivers instead of the patient. (even though this one seemed motivated by the needs of both)" - The Wiz, this is precisely what I feared when I read the story. Trends in medical treatment start slowly with one case, then another and suddenly the trend can become the norm...and it's not necessarily ethical.

    I also agree with Carrie - I'm grateful that I'm not the one making the judgement call in this case and pray that I never have to on behalf of my own children.
    posted by Blogger chloe at 1/05/2007 09:45:00 AM  

  • When my MIL's mother became too old to care for MIL's sister, who was in the same state as this little girl, my MIL took over the responsibility. Witnessing that experience, not even participating, makes me think that these parents made the right decision. Sis was a full grown adult but frail and it still took two grown adults to move her. Diaper changes were a comlicated system of winches and people, and bed sores were a constant concern. She was moved from the bed to a chair once a day while the sheets were cleaned and any other things that needed to be dealt with. If Sis needed to be moved while there was no nurse around (nurses came twice a day, live in was WAY too expensive) MIL had to call around to neighbors to see if anyone could help move her. She never went anywhere, it was too comlicated to get her from the bed to the chair to the car. Sis spent 20 hours a day in bed with the TV on for company. That's just the tip of the iceberg.

    It sounds like these parents want to continue to involve the girl in outside activities and snuggling and so on, which would not be possible if she were to grow to the size of a full grown woman. Is it ethical? I'm going to go with yes. It's not like this is being done to a girl with Down Syndrome so parents don't have to deal with periods. This is a family making a decision that will allow them to care for their daughter instead of institutionalizing her, which ends up being the only option for a lot of these parents. They may be able to physically take care of an adult size woman now if they had to, but what happens when she 40 and they are 80. There is a difference between convenience
    and necessity.

    As far as making medical decisions based on the needs of the patient vs. caregiver, what's better for the patient...Two loving parents who are physically (not to mention mentally and emotionally) able to care for her for at least the rest of their lives or spending most of her adulthood in an institution being cared for by an over-worked and under-payed staff?
    posted by Anonymous mimi at 1/05/2007 10:17:00 AM  

  • Taking care of heavy people is a big problem, and bed sores can be deadly. I took care of somebody who could not be lifted by just one person. It made his care that much more complicated, as there had to be not one, but two people around when it came time to transfer him. Slings, lifts, etc were not effective, and I am told that he even fell from one such lift that permanently injured his shoulder. We were stuck with the two person transer.

    During that same time, I took care of another quad who was significantly lighter, and he was able to participate in so many other activities, just because one person (me!) could sling him around a lot. We could go swimming, we could go out on picnics, and if his van was in repair, we could rig something for the front seat of a regular car, just because it didn't require a lift to get him in it.

    That being said, I don't know how comfortable I am with creating a situation where a person's growth is deliberately stunted. I can totally see why her parents did what they did, and in some ways, it may improve or at least maintain whatever quality of life she has. Still, I'm not sure I would have been able to do it. God bless them.
    posted by Blogger Heather O. at 1/05/2007 11:42:00 AM  

  • Wow- like Wiz and Carrie said, God willing, I will not have to make such a choice. Bless her family and her.
    posted by Blogger tracy m at 1/05/2007 01:55:00 PM  

  • Thanks for this post. When I read the article this morning, I wasnt' sure what to think, either.

    Thank you, Mimi and heather for your insights. I seriously wouldn't know what to do unless I was in that situation myself.

    Man, what a hard decision to make...
    posted by Anonymous Anonymous at 1/05/2007 02:30:00 PM  

  • I think that it is a wise choice on the parent's part. As for the idea that this sort of thing might someday be done for the ease of the caregiver, I don't think it will be a problem because the parents aren't doing this to make their lives easy (or even easier), caring for a child like this will never ever be easy. What the parents are doing is seeking to make it possible for them to care for their daughter themselves, possibly for the rest of her life. They are also doing it in a way that will substantially increase the daughter's quality of life by allowing her to do the things she is capable of enjoying with people who love her.
    posted by Anonymous Anonymous at 1/05/2007 09:57:00 PM  

  • As parents I think we would all agree that we do what's necessary to make sure our little ones are well cared for, comfortable, and happy. I have a special needs son and it would break my heart if I could not care for him.

    I don't know what I would do in this situation but I only know that I cannot be the judge. I think if it came down to being able to care for my child (thinking size here) or placing him in an institution... I would choose the former.

    Here is Ashleys blog:
    posted by Blogger Mel at 1/07/2007 07:57:00 PM  

  • Mel, thanks for including the link to Ashley's page. I read the entire article and now have a much better understanding of why her parents chose the course of action they did for their daughter.

    I encourage everyone who has posted a comment on this post to read the link Mel included:

    posted by Blogger chloe at 1/07/2007 09:43:00 PM  

  • When I initially saw the article a week or so ago I thought"this is too crazy, I have to read it" But after reading it I have to admit that I agree with her folks. They want what's best for their child, to be at home with parents who love her and can care for her.
    Try to imagine what a difficult choice that must have been for them. It's not something you just wake up one morning and do, there had to have been many days and nights of emotional struggle, feeling the ability to care for their own child slipping away, feeling her grow closer to being institutionalized every day, what a heartbreaking thing to imagine.
    As for the ethics, at least a few doctors believe it to be so, or they would not have performed the procedures.
    Should the system have been able to help them better? Absolutely. But I've learned that any system is faaaar from perfect, and when it can't help you, you must help yourself.
    posted by Anonymous Anonymous at 1/08/2007 10:38:00 PM  

  • Here is a follow up article on the CNN website about the outcry that has occurred since this story went live:

    posted by Blogger chloe at 1/11/2007 08:03:00 PM  

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