The case of the “pillow angel” has drawn worldwide attention. The case refers to Ashley a mentally disabled 9-year-old girl with the mental capacity of a 3 month old. She is neurologically and cognitively impaired. To keep her manageable her parents consulted geneticists, pediatricians and many other doctors to decide on available treatments to improve the quality of life of their child. Each treatment was decided upon and discussed with lawyers and an ethics committee of 40 people.
A combination of treatments were decided upon including a hysterectomy, breast bud removal and an appendectomy. Then high-doses of estrogen were administered over the course of 2 years to keep her at small stature - 4’5”.
Reasoning of Treatments
Hysterectomy – To keep Ashley from having menstrual cycle and the pains associated with menstruation and to prevent the possibility of pregnancy.
Breast Bud Removal – Big breasts run on both sides of Ashley’s family, the removing of the breast buds will alleviate discomfort and the need for future breast tissue removal.
Appendectomy – Ashley is unable to express when she is feeling pain or discomfort, since 5% of the population will have appendicitis her parents took the precaution to have the operation done.
Estrogen Therapy – Ashley was administered estrogen to keep her of small stature and 65 pounds in weight. This will alleviate her from getting bedsores and pressure ulcers. The parents also state this will keep Ashley manageable and easier to bathe and strapped into her wheelchair.
Problem
The treatments have been argued by ethicists to benefit the parents and not Ashley. Several opinions litter the internet in regards to this issue. Is keeping a child from developing the answer to dealing with mentally disabled children? What if there was a misdiagnoses or a treatment was found in the future?
Here is a direct quote from Ashley’s Parents Blog…
"Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden. Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."
On the Net:
Ashley's blog: http://ashleytreatment.spaces.live.com
News Story: http://www.saukvalley.com/articles/2007/01/05/news/state/353008164366814.txt
Attenuating Growth: http://archpedi.ama-assn.org/cgi/content/short/160/10/1013
