Parents Have Daughter Take Hormones & Undergo Surgery To Stunt Growth & Development

[Family Ties Forever!]

Anyone else hear about this on the news?

link

Surgery on Girl Raises Ethical Questions

Last Edited: Thursday, 04 Jan 2007, 6:40 PM CST
Created: Thursday, 04 Jan 2007, 6:40 PM CST

Dr. Douglas Diekema, Director of Education Childrens Center for Pediatric Bioethics at Childrens Hospital and regional Medical Center speaks in Seattle on Thursday, Jan. 4, 2007. Diekema met with the parents of a severely mentally and physically disabled child known as "Ashley", and says he is convinced that their decision to stunt their daughters growth is motivated by love and the girl's best interests. The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth.

(AP Photo/Kevin P. Casey) By Lindsey Tanner
AP Medical Writer

Chicago -- In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.
The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.

University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."

Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.

"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."

The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.

Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."

She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.

An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.

She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.

"Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote.

Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.

"Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."

Caplan questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," the ethicist said.

Dr. Douglas Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.

"The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time.'"

Copyright 2007 Associated Press. All rights reserved.

[swedeace]

When kids are given these types of growth hormones, don't they end up way taller and bigger than average? Almost like a giant? Yikes....

[Ireneparalegal]

I heard abt it yesterday.

I feel torn abt this. I mean, no one knows what one should do unless they are in their shoes, however, the fact that these parents want to stunt her growth merely to make it easier to handle her, to carry her, etc. seems wrong. I mean, how many elderly people or adult people are incapacitated and must be dealt with? They decided to "stick it out" when they decided to have this child, therefore, the fact that they were going to deal with a child who would eventually grow up seems like they have a warped sense of what it means to deal with a handicapped person. I bet those who deal with handicapped adults would love NOT TO HAVE THE BURDEN of moving them around, but they do it anyways. THAT'S LIFE. To have this child's uterus and breast buds removed seems so crazy to me. I don't know, I am not in that situation. What I want to know is, how did the doctors who did this come to agreement?

[Titania]

I knew a girl in high school who's mother had her take hormones to delay her puberty so she'd stay small (she was around 5' even and no more than 85 pounds at 18) it wasnt for any medical reason like these though...her mother was a coach and it was so she would be the smallest girl in chearleading and be on top/fly in all the formations. Pretty sad stuff.


I'm torn in this case though- on the one hand, it sounds awful what they're doing to their daughter. But at the same time, theyre going to have to care for her for her entire life and it sounds like there are some legit medical benefits...I'm sure that in their place I'd be looking for every option too. Just a horrible situation.

[Courtnee]

That's awful.

[Lex Luthor]

I completely understand the reasoning for doing this but it just opens the door to how much is too much when we are talking tampering with someones growth, hormones. dna, etc..

It reminds me of many years ago when the wanted to sterilize people based on their IQ level. I do not know with tampering with Gods creation (or Mother nature/darwin if you prefer) is a good idea. The line is getting blurry and I wonder when it will be all but gone and people will be as much a medical creation as they are human.

[Ireneparalegal]

Here is another article abt the debate that is brewing since this story broke:

Surgery to Stunt Girl's Growth Sparks Debate
By LINDSEY TANNER, AP

CHICAGO (Jan. 4) - In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.

Ashley's parents say keeping her small will reduce the risk of bedsores, and preventing her from going through puberty will avoid the discomfort of periods.

The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.

University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."

Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.

"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."

The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.

Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."

She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.

An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.

She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.

"Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote.

Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.

"Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."

Caplan questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," the ethicist said.

Dr. Douglas Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.

"The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time."'


01/04/07 17:33 EST

[felicitylen]

Originally Posted by Ireneparalegal

I heard abt it yesterday.

I feel torn abt this. I mean, no one knows what one should do unless they are in their shoes, however, the fact that these parents want to stunt her growth merely to make it easier to handle her, to carry her, etc. seems wrong. I mean, how many elderly people or adult people are incapacitated and must be dealt with? They decided to "stick it out" when they decided to have this child, therefore, the fact that they were going to deal with a child who would eventually grow up seems like they have a warped sense of what it means to deal with a handicapped person. I bet those who deal with handicapped adults would love NOT TO HAVE THE BURDEN of moving them around, but they do it anyways. THAT'S LIFE. To have this child's uterus and breast buds removed seems so crazy to me. I don't know, I am not in that situation. What I want to know is, how did the doctors who did this come to agreement?

I completely agree with everything you said. I think it's disturbing for what her parents did. I understand they want her to be their "pillow angel" but their thought process is still disturbing. It seem like the real reason was to make it easier on them so they could be able to move their daughter around easily. Actually, I'm surprised CPS and the ACLU or the Human Rights Campaign weren't called in to investigate this story.

[Ireneparalegal]

Originally Posted by felicitylen

I completely agree with everything you said. I think it's disturbing for what her parents did. I understand they want her to be their "pillow angel" but their thought process is still disturbing. It seem like the real reason was to make it easier on them so they could be able to move their daughter around easily. Actually, I'm surprised CPS and the ACLU or the Human Rights Campaign weren't called in to investigate this story.

I am surprised too. Maybe they will now.

[EmpressDR]

I understand the whys and wherefores but still am sickened by it


If you recall the video and photos of Rosemary Kennedy, a normal-sized-though-on-the-large-side woman, obliged to have two handlers to move her around, the compact size makes sense.
OF course, Poor Rosemary is a case of her dad having interfered with her own biology by having her lobotomized.


There have been times. in hearing the vehement discussions of sex education and sexuality of teens that I've thought that parents would if they could cut their child's genitals off, and keep them in a jar, until and unless they FEEL like allowing their offspring to have sexual choice --and what indeed if they accidently threw them out? Oh, dear, I thought that jar was stale leftovers!

[felicitylen]

CNN talked about this story this morning and I was still disturbed about the whole thing. I think what the parents did to their child is going to open up a panadora box for other parents to do the same.

[Ireneparalegal]

One of the doctors who performed one of the procedures on the little girl equated it to parents who have children who are "overgrowing" (due to a pituitary gland problem) and they have surgery to correct that; he also compared it to those children who are very short and take growth hormones and have their leg bones "lengthened" thru surgery and braces. As for me, I don't see how that procedure to make your child "taller" is ok either. I mean, there are short people, there are dwarfs, there are people who lose their legs, etc. People need to deal with real life not worry abt their size.

[felicitylen]

Originally Posted by Ireneparalegal

One of the doctors who performed one of the procedures on the little girl equated it to parents who have children who are "overgrowing" (due to a pituitary gland problem) and they have surgery to correct that; he also compared it to those children who are very short and take growth hormones and have their leg bones "lengthened" thru surgery and braces. As for me, I don't see how that procedure to make your child "taller" is ok either. I mean, there are short people, there are dwarfs, there are people who lose their legs, etc. People need to deal with real life not worry abt their size.

Thank you! That's what is so messed up about the whole thing. Ashley's parents are not dealing with real life in the sense they want their daughter to stay the "pillow angel" and want to be able to more her around easily. That just changes everything.

[Ireneparalegal]

What worries me now, is what illnesses or health problems did they bring upon their daughter now that she has been injected with all these hormones? They seemed so damn concerned abt breast cancer, yet let's inject our daughter with something that is going to keep her small? Crazy ass parents. I mean, the damage is done, they took her breasts and her uterus. I kinda wonder if their daughter would have had a period anyhow, I mean, she is a sick little girl. Not all severely sick females with a uterus have periods. What does this say abt females who are severely injured let's say, in a car accident, and that female can never walk or talk again and must be cared for 24-7...Take out her uterus? Remove her breasts? Let's make life easier for "us" so we don't have to clean up after her? Let's remove her breasts because we don't want her to deal with the possibility of breast cancer. SH*T happens in the real world, what abt healthy women who have breast cancer that runs in the family? They don't have their breasts removed based on a "possibility" that they may get cancer.

[EmpressDR]

Originally Posted by Ireneparalegal

What worries me now, is what illnesses or health problems did they bring upon their daughter now that she has been injected with all these hormones? They seemed so damn concerned abt breast cancer, yet let's inject our daughter with something that is going to keep her small? Crazy ass parents. I mean, the damage is done, they took her breasts and her uterus. I kinda wonder if their daughter would have had a period anyhow, I mean, she is a sick little girl. Not all severely sick females with a uterus have periods. What does this say abt females who are severely injured let's say, in a car accident, and that female can never walk or talk again and must be cared for 24-7...Take out her uterus? Remove her breasts? Let's make life easier for "us" so we don't have to clean up after her? Let's remove her breasts because we don't want her to deal with the possibility of breast cancer. SH*T happens in the real world, what abt healthy women who have breast cancer that runs in the family? They don't have their breasts removed based on a "possibility" that they may get cancer.

Some DO have surgery ahead of time, like that whole family that had their stomachs removed, to avoid stomach cancer.
I can't say anytbing about that --but they are making that choice for their own bodies.

But that brings up a point --what indeed if this gives precedance to do similar surgery "for their own good"?
They DID use to sterilize people, as mentioned in an earlier post, for low IQ, and also people --even children! --in mental institutions were sterilized.
And the uglier thing--I read that the Nazis got the idea for eugenics from these American doctors who were practicing it!
So they sterilized hundreds of Jews, Gypsies, and others.
Of course, if it was an alternative to killing them, at least they are alive, and were witnesses --but that is an ugly thing to live with --knowing that others stole your human right to reproduce. :