I had read about this little girl some years back and found the case to be quite thought-provoking. Found this update and was wondering what some of my GS friends might think about the treatment chosen by Ashley’s parents…
Parents who froze girl in time defend their actions
Opinion was divided yesterday about the case of Ashley X, the nine-year- old girl whom doctors have determined will never grow up. The severely disabled child has had her womb and breasts removed and hormone treatment to halt puberty and stunt her growth, freezing her development so that her parents can continue to lift and care for her at home.
Called “Pillow Angel” by her parents, the girl, who suffers from static encephalopathy, cannot walk, talk or hold her head up. She is fed through a tube and lies wherever she is put, usually on a pillow.
Her parents, from Seattle, who describe themselves as college-educated professionals, gave their reasons for seeking the treatment for their daughter in a 4,000-word blog launched on New Year’s Day.
Only those in a similar situation were qualified to comment, they said. "Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their care givers.
"Ashley was dealt a challenging life and the least that we could do as her loving parents and caregivers is to be diligent about maximising her quality of life.
“A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver.”
The parents also describe how their daughter is faring after the medical procedures in other blog entries. “Ashley is doing well … [she is] healthy, happy, and lovingly cared for.”
…
Ashley’s parents chose, in consultation with her doctors, a treatment known as growth attenuation. In 2004, doctors in Seattle, where the family lives, carried out a hysterectomy and surgery to remove her breast buds and started her on the hormone oestrogen to halt puberty.
The aim was to restrict her height to its present 4ft 5in - compared with the 5ft 6in expected without treatment - and to limit her weight to about five-and-a-half stones, instead of the nine stones expected.
Source and full article can be found at:
Parents who froze girl in time defend their actions - Americas - World - The Independent
Caring for a child with special needs is a taxing responsibility…physically and emotionally. In cases where the disability is so severe that the child is unable to convey their discomfort do we, as parents, have the right to take such extreme measures? Are we obligated to?
What do you think?