How will this effect her coginitive development?

Question

By Lindsey Tanner, Associated Press
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.
ON DEADLINE: Debate the case, read family's blog

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," Joel Frader, a doctor and 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.

Douglas Diekema, a doctor and 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 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Answer 1

I wouldn't think her cognitive development would be impaired in any way. Her hormonal balance, if stabilized with treatments, should be OK. I would think they would have had to have a doctor sign off on this, in order to get it done. I think that there would have been more than one doctor having to agree to this. The hospital that the surgery was performed in would have had their say in whether it should have been done or not. Whose to say that it was the parent's idea? It could have been the doctor's idea and the parents went along with their diagnosis. Some things can seem to be painful and tragic, but this could possibly be a blessing for the child. Who are we to judge these parents as they struggle to make decisions for a child that will never be able to live on her own and lead a normal life.

Answer 2

I had a vanishing mother - sort of acted like the Cheshire Cat in Alice in Wonderland - and a near absent father - so I was pretty much an orphan, I'd say. That accounts for my still thinking that women are great creatures - which explains why so many of them have trashed me in my life. ADDS:- Oh - I'm like sarafina - I've done absolutely everything in my power to ensure that my children never missed out on anything - ever. They are doing just fine, thank you for asking.

Answer 3

If the child is severely mentally retarded, it is not likely to affect her mental development or language development in any measurable way, but as I said in another post, I would not advocate this treatment for the child's benefit. It could affect other forms of development. If it delays or eliminates hormonal development, it could affect development in that way. What will be the effects on aging? I don't know, I have never heard of this done before.

Answer 4

I'm a pretty practical gal, but this seems like painful, unneccessary surgery for the child in order to be convenient to the parents. Of course, I am not in their position and I don't know what it would be like to have that child. It's heartbreaking.

Phew! I feel for that family.

Answer 5

I read about that when they first decided to get the surgery for her. I don't think that it will effect her cognitive development being that she really doesn't have any. from what it says in that article she hasn't developed past an infant and she is nine years old now so i don't think that it would effect cognitively in any way.