Surgery to stunt girl's growth sparks debate

[Liebling:-)))]

Surgery to stunt girl's growth sparks debate - Kids & Parenting - MSNBC.com

Surgery to stunt girl’s growth sparks debate

Parents say drastic treatment allows them to take better care of their child

Ashley's Blog
A family photo on "Ashley's blog" shows the Seattle girl in 2003, a year before she completed hormone therapy intended to stunt her growth.

Jan. 5: A severely disabled girl in Seattle can't walk, talk or eat. So the parents of the 9-year-old have decided to keep her small. NBC's Jinah Kim has the details.

Updated: 12:50 p.m. ET Jan. 5, 2007
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.

Some ethicists question the parents’ claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.

The case has captured attention nationwide and abroad. “Offensive if not perverse,” wrote one person on MSNBC.com's bulletin board. “This smacks of eugenics, but I understand the parents thought process,” another wrote.

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.

Left in an infant state
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 says 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.

University of Pennsylvania bioethicist and MSNBC.com columnist Art Caplan said the case is troubling and questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient’s direct benefit “only seems wrong to me,” Caplan said.

But Dr. Benjamin Wilfond, a pediatric bioethicist at Children’s Hospital, said that while he "was a little startled" when he first learned of Ashley’s case, he understood the parents’ decision.

"In this case, being short is a benefit to the child," Wilfond told NBC affiliate KING-TV of Seattle. "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 an intention to help the child."

Comfort and convenience cited
Ashley’s parents say keeping her small will help reduce risks for bedsores and other conditions that can afflict bedridden patients. Also, they say preventing her from going through puberty means she won’t experience the discomfort of having periods or growing 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’ blog says. Still, they wrote, “Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers.”

Deborah Feldman of KING-TV contributed to this report.

© 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

 

[Liebling:-)))]

Do you agree with the parent's decision?

I have mixed feeling after read this thread here...

It didn't say anything either a girl has a chance to improve her development or not?

wow, I didn't know this case much to say... I need to focus first before I say something. What have you any suggestion? What do you think of this? I need to collect your suggestion then I might agree or disagree with you all.

 

[Liebling:-)))]

Parents of a 9-year-old brain-damaged child are still struggling with the fallout from their ethically questionable decision to permanently stunt their daughter's growth over two years ago.


The surgery, performed in a Seattle hospital, removed 9-year-old Ashley's uterus and breast tissue and added large doses of hormones in order to keep her in a permanent childhood state, according to the Associated Press.


Ashley suffers from static encephalopathy, which has left her in an infant-like state, unable to sit up, roll over, hold a toy, walk or talk.


Ashley's parents claim that the surgery has benefited their daughter's well-being by allowing them to care for her at home and include her in family activities.


While the surgery will help reduce some risks for bedsores and prevent the discomforts of puberty, it is more of a benefit for Ashley's parents, allowing them to keep their daughter at the manageable size of 4-foot-5 and 65 pounds.


Ashley's surgery begs the question of whether it is ever appropriate to perform a treatment that is not for the patient's direct benefit.


We acknowledge the difficulty of raising a brain-damaged child, and we have no conceivable notion of what Ashley and her parents go through on a day-to-day basis, but there has got to be a better way to raise a disabled child than by keeping her a permanent 9-year-old.


Ashley's parents claim that they had trouble finding suitable outside help for their daughter.


While this may be true, there are thousands of other parents out there that have found ways to successfully care for and treat their disabled children without resorting to putting them into a state of permanent childhood.


Would moving to an area that was closer to a specialized health care facility be any more drastic than stunting Ashley's growth?


We are uncertain whether Ashley's parents, who have chosen to improve their own condition over the risk of their daughter's, are even competent to care for her at home in the first place.


Ashley's surgery ushers in a slippery slope of ethical issues. If it is appropriate and legal to prevent a brain-damaged child from growing, what is to prevent parents from doing the same for their children with other birth defects, such as Down's syndrome?


Ashley's surgery also prevents her from enjoying a normal life in the future, when treatments and health care innovations may develop that would be able to improve her condition.


The choice to stunt Ashley's growth at her own risk and for her parents' benefits is a sad reflection of what the future of treatment for disabled children in our country might be, and an embarrassment for the millions of parents nationwide that struggle and sacrifice for the health of their children.

EDITORIAL - Growth stunting unethical, selfish - Opinion

 

[Liebling:-)))]

Ashley's Treatment: Family Stunts Disabled Daughter's Growth, Medical Debate Sparks - Associated Content

It says in the article:

"It's very important to the paernts to provide as personal a level of care as they can. Dad would much prefer to pick her up in the morning out of bed and give her a hug and carry her to the chair and carry her from the chair to the car for as long as he can do that physically."

Some doctor's disagree with using severly disable people as basically guniea pigs for odd medical treatments. Dr. Jeffrey Brosco, from the University of Miami, also an ethicist says that Ashley's story is diverting attention away from the bigger issues, such as side effects and straying away from the issue that in America, "we aren't doing a good job of helping parents keep their adult children at home," he said.

 

[Liebling:-)))]

Welcome to Ashley's Blog

Blog


I'm going to read this blog and will try to understand why the parent doing for Ashley.

 

[GalaxyAngel]

:::::Breaking my hearts goes out for her:::::
Why can't her parent should have help her and better condition future sake!?

 

[Liebling:-)))]

Read links and blogs and must say that this case is similar as Terri Schavio.

I’m not saying that I'm agree with parents for what they did to their daughter. Accord links/blogs, it's easier for the parents to deal with her daughter with small size than adult size. I can image it is much work hard to take care of adult size than small size. Remove her breast buds and uterus to prevent her become puberty is a abuse... IMO.

I personally would not do that... I would rather to have my parent to euthenize me. I mean, no life for me... No mind and feeling or talking... Nothing... Unfair for that child to live like that rest of her life.

I don't understand people sometimes... The people often says that they euthenize pets to save their suffer... but enthenize suffer humans will be consider murder, not pet....

 

[shel90]

Read links and blogs and must say that this case is similar as Terri Schavio.

I’m not saying that I'm agree with parents for what they did to their daughter. Accord links/blogs, it's easier for the parents to deal with her daughter with small size than adult size. I can image it is much work hard to take care of adult size than small size. Remove her breast buds and uterus to prevent her become puberty is a abuse... IMO.

I personally would not do that... I would rather to have my parent to euthenize me. I mean, no life for me... No mind and feeling or talking... Nothing... Unfair for that child to live like that rest of her life.

I don't understand people sometimes... The people often says that they euthenize pets to save their suffer... but enthenize suffer humans will be consider murder, not pet....

Yea I agree. My mom said if her mental state goes down the tubes, my brother and I are ordered to drive her waaayyyyy out in the desert and just leave her there in the middle of summer. What she really means is dont let her live if she is in a vegative state. I cant blame her. I dont think I want to live like that either.

As for the parents...I really dont have any opinion cuz I dont know what it is like to take care of an invalid day in and day out so I cant pass judgement.

 

[Angel]

hmmm I don't remember posting in this thread, ..Forgive my first post, I must have been high on vicks, yeah I'm sick with the flu...


Anyways, I would like to applaud the parents for taking good care of their daughter, even through it must be hard taking much of their free time taking care of her, I honestly don't know what it like to be in their situation so I can't say what should have been done etc.....As far it's goes with the Terri Schavio's story, you already know how I feel about that, IF there was a living will then I would have accept the fact this is what the person wanted, but for this case, this young girl is too young to make a life and death decision, so if the parents wants to keep her alive, in this condition, then they have that right....

I think the hardest part is letting someone you love go, so I can't make any judgements on the parent's part of allowing her to be in this condition...This isn't an easy decision to make, but I'm just saddness to see a child going through this, but at the same time my heart goes out to the parents since they're the one taking care of her....That's all I'm gonna to say on this soooo yeah this is a tough situation...

 

[Liebling:-)))]

Yes I'm agree with you both, Shed90 and Angel.