Just another parental choice? <shocked> 1/4/07 - Page 3

[cristina63303]

Guys, this is a really tough one. Let's all hope that we're never in a position to make any of those decisions. Let him/her who is free from sin cast the first stone. As much as I find the procedure difficult to live with/accept/defend, I also hate to judge someone who is in such a desperate situation. This in no way compares to the decision of circumcision of a healthy infant.

[MaryJaneLouise]

I agree, this is not the same as circumcision. She will never have the ability to make these decisions for herself, as nearly all baby boys will. She will always remain a mental infant; I can understand keeping her baby in an infantile state as well.

[wasabi]

Originally Posted by Quirky

Jen, have you read the parents' blog and the comments that they clipped from a debate board? Having read through the whole thing, I have to say I understand where they are coming from, and I think you are being unfair.

This is about far more than convenience in terms of where the driver's seat fits. If my dd were to be permanently brain damaged tomorrow with no hope of recovery, I very well might make the same choices these parents have so that I could continue to care for her. Can you imagine trying to take care of a 150 pound, 5 foot 6 adult woman with the brain of a 3 month old? I sure can't. I very well might take measures to restrict her growth so that I could continue to care for my baby myself rather than have to put her in a state institution.

Read this. The whole thing. http://ashleytreatment.spaces.live.com/blog/

Truly, it is eye-opening and I don't think these parents deserve the criticism.

This is nothing like circumcision. It's not even in the same universe.

ITA. My knee jerk reaction was WTF but then I read more about it. I think to even say they are keeping her an eternal child is misleading. She will reach a height of about 4.5 feet. That's not much smaller than some full grown women. It will still be difficult to move her around possible for them to do on their own whereas if she had grown to full size they might not have been able to do so. They seem geniuine and sincere and that a lot went into the decision.

As for as removing the breasts and uterus this was not just because of avoiding periods and predators but also because the estrogen she was on made her more likely to experience reproductive cancers especially due to their family history. This story must made me more greatful I'm not in this position. I don't know that I'd do the same but I can't fault them for their choices. Definitely nothing like circing to me.

[DocsNemesis]

Originally Posted by Ambrose

How is this silly? Do you think it is healthy to sit in blood? She most likely has a catheter so she does not pee on herself. There isn't a way to get the blood out like that. So what do you propose?

They already have her on hormones to prevent her growth right? I'm not sure what they have her on, but anyway....giving estrogen and progesterone would prevent periods. I know, I was on moderate levels of it for IVF for several months. No auntie flow, thats the whole point of it. So if she is already on hormones, why not do that than remove her uterus?

[pdx.mothernurture]

There's also a procedure called endometrial ablation that permanently destroys the uterine lining minimizing or eliminating periods entirely.

"Endometrial ablation is the removal or destruction of the endometrium (lining of the uterus). It does not require hospitalization, and most women return to normal activities in a day or two. Ablation is an alternative to hysterectomy for many women with heavy uterine bleeding who are wish to avoid major surgery. After a successful endometrial ablation, most women will have little or no menstrual bleeding. Patient selection and physician experience is essential to a good outcome."

http://www.gynalternatives.com/ablation.htm

"There is no hospital stay, less discomfort and a quicker recovery. THESE ARE REASONS ENOUGH TO CONSIDER YOUR OPTIONS IF YOU ARE A CANDIDATE FOR HYSTERECTOMY. According to recent studies, most women feel that Endometrial Ablation relieves the problem with their periods. Up to 90% of women who have this procedure are satisfied with the results. After the procedure, most women report no periods or a marked decrease in their menstrual cycle."

http://www.endometrialablation.com/

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Still, if we're talking about a therapy just for the benefit of the care providers it reminds me of those who argue caring for elderly intact men is complicated, difficult, or disgusting because they're uncomfortable providing basic gential hygiene (pericare).

Ashley may have a catheter, in which case she'd just need someone to change her pad throughout the day when she's menstruating. If she wears adult briefs, she's being changed frequently throughout the day anyway. Disposable 'washcloths' or babywipes make pericare quick and easy, just wipe and toss.

It may not be easy, or pleasant; it may be initially uncomfortable for caregivers, but it can-and is-being done for dependent, disabled adults all over the world.

Jen

[Ambrose]

Originally Posted by DocsNemesis

They already have her on hormones to prevent her growth right? I'm not sure what they have her on, but anyway....giving estrogen and progesterone would prevent periods. I know, I was on moderate levels of it for IVF for several months. No auntie flow, thats the whole point of it. So if she is already on hormones, why not do that than remove her uterus?

The hormones have been completed. It was to speed things up so she would reach her growth max. They stopped it.

[MommytoB]

I do not agree with the 'actions' after all I'm a gal with disability myself and when I was in highschool I worked in special education area for one of my school electives.

How interesting and so amazing to see the quality of disability impressed upon you even by their lack of 'abilities' like talking, walking, or some of them not being able to eat like w/ a spoon , blind, and deaf. I seen so many variations of different -between -non walkers, not talkers, no seizures, and had to be fed through a feeding tube . You could see emotion in them and for them to shockingly to not be able to say anything - they would actually laugh if something was funny!

So in my sense 'if they are able to see the world about them they already suffered a change w/o their wants which is their disability that was placed upon them but to 'add more change when those parts are the 'actual normal parts' ? Kids depending on disability and how mild to severe it is . If the child hasn't been in a surgery area why put them there to 'change part of the child body ?

Believe me I am a gal who is disabled and have had 24 surgeries and one of them began @ 6 wks of age ! Even for ear tubes I went in do not have them now and omg when this one doc in north hollywood he said 'ear tubes would help the fungus gunk from being in my ear he actually tried to see about putting the ear tubes in my ears while I was awake and he got close enough to do the shot in the middle owwwww I freaked out & was hyperventilating - last time I ever saw him again, I have had my jaw wired shut twice - i can give you 'advice what actually taste good blended , i had all my teeth taken out - even after spending most of teenage years on a 'grueling monstrous evil orthodontist! It cost mom 800$ dollars on that part and oh he was the 'reason why I had became so fearful of dentist and even to be able to see them! Even though that was 'dealing with orthodontic work like braces and retainers oh how cruel he was !

Oh how I'm so glad that my son suprisingly is more normal than me has never been placed on a surgical table and if he is placed on one I hope it is only for 'medical 'reasons only and no one try to do a change because they think it would make it seem better.

I know for a fact how a 'medical consensual surgery even at the age of 16 when I had to fix my nose -because of my cleft lip in ways I didn't really mind of my flat nose from my cleft lip oh how i only was supposed to go in for nose rescontructive surgery I had two surgeries when I was only supposed to have one which was otoplasty stapling my ears back to my head - he's still in the surgical ream of top ten cosmetic plastic surgeons in colorado - my mom had decided on the best and he charged for both procedures even though 'we were not even told of the 2nd one and no even signed to have that one down @ all.

In sense his only saying was I thought that I would add a lil helpful bonus to her because her ears were sticking out of her surgical cap oh how I am still ambivilent at him doing that .

Which is what I am saying I had other surgies in my life time that was needed to be done medically and then to have one done because a doctor just wanted to see if he could pocket extra money and it was not even needed or requested @ that time!

I had to suffer with a unneeeded healing period of my ears which one of my ears got totally deaf because of his 'helpfulness' it's my left ear and my left ear is so damaged and they can't even the skin that is attached to the side of my head because it's stuck to the skull part! The right ear wasn't so tight as the left one so it's not as stuck as on the skull bone.

But what I am 'saying is even people who have disabilities even though some may not be able to tell us or be somewhat like us - don't give them unneeded surgeries to spend up money - believe me I wouldn't !