Always be my baby?

I'm sorry that the blogs aren't coming very often yet- they will come out more regularly soon!






Ashley is nine years old. (Picture is from 12/06) She has had no mental development since the age of three months. She is confined to either being strapped into a wheelchair or lying down all of the time. She can't lift her own head or roll over by herself. Her parents, in an effort to give her a comfortable life, have opted to do several things.



First, they used hormone treatment to prevent her from growing more than four and a half feet tall and from weighing more than about seventy five pounds (as opposed to the five and a half feet tall and one hundred twenty five pounds she was expected to weigh- a difference of about one foot in height and fifty pounds in weight). This is supposed to keep her small and light enough that she can be moved easily and to prevent bedsores. Because of her size, she can be moved around more often than most 'Pillow Angels', which makes life more interesting for her. Being more mobile is also a health advantage, as she will likely have better circulation, a better functioning digestive tract, and more flexibility because of it, as well as several other major advantages.



Secondly, a hysterectomy was performed, so that she would not have to suffer through menstruation and all of its symptoms. This procedure prevents her from ever having children, but because of her physical and mental state, she would not be capable of childbearing or caring for a child anyhow. She will also never be able to get uterine cancer. During this procedure, her appendix was also removed. Because Ashley cannot relate pain to others, if she had appendicitis, no one would know and the appendix could eventually rupture, which is deadly.



Thirdly, they prevented her breasts from growing by removing the early breast buds (this is not a mastectomy, as the breast tissue has not developed yet. Breast buds are about the size of almonds and contain the milk glands- the procedure is similar to a procedure used to remove birthmarks). Large breasts run in the family and would cause respiratory discomfort if allowed to grow. They would also get in the way of protective straps on her wheelchair, stander and bath chair. As an added advantage, because Ashley has no breast tissue, she can never get breast cancer (which also runs in the family). This procedure is often done on boys who will need high-estrogen therapy later in life.


The highly debated question is, of course, the ethics behind this method of treatment. Should parents be able to make these kinds of decisions?
My opinion is yes and no.
Through the ages, people have used medicine to enhance the quality and length of their lives. In many cases, people have to remove parts of their bodies- such as in cases of certain cancers, gangrene, some injuries, and other things. Even in cosmetic surgery, people have fat and breast tissue removed. As far as the hysterectomy, appendectomy, and breast bud removal, I believe that Ashley's parents have made a good choice. These three things are all common surgeries that are being used to aid in Ashley's health and comfort. I believe the same thing about the not-so-common choice to stunt her growth. This procedure makes her able to have home care, something that many bed-ridden patients can't have- and helps prevent her from becoming bored.
This is the yes part of my answer.
The no part is saying that this procedure is NOT for all disabled children. Every disability is a little different, and these methods that are for Ashley's greater good are not going to help every disabled child- they could actually hurt them. As long as parents approach this kind of a decision carefully and with the help of several trustworthy doctors (As Ashley's parents did), they should be able to figure out what is the right thing for their child.
The ultimate goal is that every person should live as fulfilling of a life as possible. That is what Ashley's parents are making possible for her. They aren't asking for your money or help, or even your opinion. They just want they're child as happy as possible. Who are they hurting by doing that?

--Xander