Right or Wrong?

[bd]

Surgery to stunt disabled girl's growth raises ethical questions

CHICAGO, Illinois (AP) -- 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 uterus and breast tissue of the bedridden 9-year-old girl were removed at a Seattle hospital, and she 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. (Watch a bioethicist discuss Ashley's condition.)

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."'

Was this the right thing to do?

Her parents will have a much easier time managing this child and will probably be able to keep her at home longer before they have to let someone else take over.

Or have they just created a pet?

What would you do with the options given?

This is an equal opportunity thread.....facts and opinions appreciated.

bd

[grahamstein]

While i understand why they do it, i dont think i can acutally form an opinion on this one. Essentially we have a person seemingly incapable of thought. In my opinion she is not much different than a piece of furniture, but she is alive none the less. I dont think it can really be considered "wrong", but something about it just doesnt seem right either. Either way, i dont think anyone can actually judge based on reading a story like this.

[Son of Norway]

I haven't walked in their shoes, so an opinion would be a shot from the hip. I can only assume they thought long and hard about this and looked at many options before deciding on this one.

My dear freind has a severly disabled son similar to what is described in this article. He has expressed concern about how to deal with his son's adult size and weight when the time comes. They have to manually move him everywhere and he is already 70+ pounds. They are looking to install a hanging chair on a "track" connected to the ceiling so they can move him about their house. If he could stay small, the task of moving him would be less of a burden.

[Krackels]

The question is who does it benefit more?

[Krackels]

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."

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.

I tend to agree with the UPENN Ethicist, even a disabled child has the right to grow up physically.

Her parents say she will never get better.

Nothing like showing your support, now that's love.

[Krackels]

Was this the right thing to do?

Right? You really should ask if this was the best thing to do?
The right part of it can be argued back and forth and can be murky, but if you ask best then well there's only one best.

No, I don't think it's the best thing to do either. I think a truly loving parent would take the good with the bad and held out hope that her/his child's condition would improve.

Or have they just created a pet?

I don't think they've created a pet. All joking aside pets are fun and if you don't like your pet you can always list it in the classifieds; a disabled child is a lot of work. This is a human being. I think they were seeking to reduce their burdens and problems down the road, and I can't blame them for wanting to do that. However, I think they made the wrong choice.

What would you do with the options given?

Honestly, I'm not sure what I'd do. I'd have to talk to all the doctors, specialists, read up about the condition and do what's best for my daughter.

[ichy_trigger]

Im sure this will inflame some debate but we have not walked in their shoes. What I can attest to is, even if they are looked down upon for trying to make this easier for them to care for her, they DID choose to care for her in her state of existence rather than to abort her or give her up to the state or someone else. Its a hard decision and I have no idea how I would handle this if put in that situation.

I would say that the easier it is for them to care for her, the better the care that she is liable to recieve.

[Frenchy]

Originally Posted by ichy_trigger

Im sure this will inflame some debate but we have not walked in their shoes. What I can attest to is, even if they are looked down upon for trying to make this easier for them to care for her, they DID choose to care for her in her state of existence rather than to abort her or give her up to the state or someone else. Its a hard decision and I have no idea how I would handle this if put in that situation.

I would say that the easier it is for them to care for her, the better the care that she is liable to recieve.

I tend to agree with you, ichy!...This is a deeply personal decision that the parents will live with. No one outside this family has the moral high ground.

[jdavionic]

Originally Posted by bd

Or have they just created a pet?

That would be a demeaning and wrong assessment, in my opinion.

Right? Wrong? What would you do? ....These questions are just impossible for me to answer. We had quite a scare with my first child, amneosentisis, etc. When it comes to your child, most people would give anything to have a healthy child. I can't imagine that they would make a decision without having their child's best interests at heart. Who are we to judge their decision?