Consumer Issues: It’s Those Shades of Grey That’ll Get You Every Time
Deborah Blanchard, ACSW, LCSW
I recently retired from my job with the State of Louisiana. At about the same time, I also fell and wound up with both a tibia plateau and a femur fracture and have been basically home-bound. The highlight of my morning has been the newspaper and the Ellen Degeneres Show (a fine American, a.k.a. good New Orleanian), and the highlight of my afternoon the mail (mostly junk—but, hey, we take what we can get). I’ve also spent a lot of time trying to avoid the morass of talk shows that flood the tube all day long. Once in a while, however, one of those infernal talk shows or something on the back pages of the paper catches my attention—and lately, it seems that many of those have to do with topics that pit a person’s civil rights against quality of life.
Sometime back, we all heard about the family who decided to remove the uterus and breast buds of their daughter with a developmental disability, so that she will stay small, allowing them to more easily care for her. I have to admit that when I first heard about this I was quite upset. But after our wonderful associate editor––Lance Harris, PhD–– forced/urged me to take another look at the situation, I found that the solution is not as cut and dried as I originally thought. In the beginning, I have to admit that I was viewing things from the point of view of a person with a disability. After hearing what Lance had to say, I began to think about it from the parents’ perspective. As he pointed out, these parents did not just arbitrarily make this decision to make their lives easier. These are parents who love their daughter and they are, indeed, looking out for her future. They realized that as their daughter grew and matured, it would be much more difficult to care for her at home—especially as they, themselves, aged. They also did not make this decision alone nor, I’m sure, did they make it overnight. They consulted many people prior to making their decision, including ethicists. Finally, the decision was made to perform the surgery.
The agony that these parents must have endured disconcertingly reminded me of other decisions that are just as difficult for parents––including prospective parents––if you consider the advances in reproductive medicine and prenatal testing we have access to today.
I was born in the early 50’s. My mom’s obstetrician was probably not long out of medical school, and back in those days they didn’t have residency programs. They hung out their shingles and were ready for practice––literally. I was the first baby with spina bifida that Mom’s doctor had delivered, and the corrective surgery to close the lesion had only been done for a couple of years. My parents were advised to go home and leave me at the hospital to “let nature take its course.” But they made the difficult decision to go ahead with the surgery—and the rest, I’m happy to say, is history.
These days, spina bifida is very treatable. There have even been some cases of prenatal surgery with a large research study now on-going in three hospitals across the country to study the efficacy of such surgery. Many people have asked me how I feel about prenatal surgery for spina bifida. Would I have the surgery if I were pregnant with a child with spina bifida? How would I counsel a couple who was expecting a baby that had spina bifida? (Strangely enough, I was asked this same question when Roe v. Wade was passed. Funny how history repeats itself).
Mercifully, I’ve never had to decide what to do in either of these situations, but I did have to work with parents who knew they were going to have a child with Down Syndrome and who were trying to decide whether or not to abort the pregnancy. Lucky for me, this came easily since my mom’s youngest sister had Down Syndrome and I was able to tell these parents from a niece’s perspective what it was like to have an aunt with Down Syndrome who was adored by our entire family. Fortunately, Gloria did not require constant supervision or care until the last few years before she died, when she developed Alzheimer’s Disease. After my grandparents died, she lived in a group home and later in a supervised apartment. This, sadly, will never be the case for the family who made the tough, and at first glance, repulsive decision, to have radical surgery performed on their little girl. She will require around the clock care for the rest of her life And those parents want to be the ones to administer her care.
By the time I finished pondering this situation, I had not only gained a whole new perspective, but a great deal of respect for these parents who I do not even know. Their child should not have to live her years as just another body occupying a bed in some nursing home after her parents become unable to care for her seriously increased needs due to her size, her puberty, and her greatly increased propensity for combative behaviors. With the surgery, she should be able to live out the rest of her days in the loving arms of her family. I just wish all parents were bold enough to make decisions such as these before it is too late. After all, as I have often told parents, “just because God has given you this wonderful child, he has not granted you immortality.”