This blog entry is for my daughter Elyse. You make me smile. Every day.
I’ve never been into New Year’s resolutions, but around this time each year, without fail, I go into a reorganizing frenzy. Out with the old, in with the new. That sort of thing. Well, perhaps not every year, but most years. Okay, every decade or so I decide it would be a good idea to throw out copies of bills I paid more than five years earlier, put at least three photos in albums, and pay THIS month’s bills. THAT sort of thing.
As I was going through various old papers (how do we accumulate so much STUFF?), I came across notes I had written detailing some of what I experienced during my pregnancy with my youngest child (Elyse), now 13, and my relationship with the …. ahem, medical experts that was often, unfortunately and unnecessarily, fraught with conflict. You see, even though I had two other children and thought I knew what to expect, my pregnancy was now defined as high risk due to my “advanced maternal age,” and the rules had changed. Big time.
During my first prenatal visit, I was given brochures outlining the prenatal testing options available for a mature woman such as myself. The literature I read stated that I had a small chance of having a child with some sort of genetic defect, and my obstetrician, Dr. Alvarez, recommended that I have a simple blood test known as AFP that checked the levels of certain substances found in the blood of pregnant women. A “screen positive” result could indicate a problem with the developing baby, in which case amniocentesis would be recommended.
If you’re familiar with amniocentesis, you know that it is a somewhat invasive test. The doctor, guided by ultrasound, sticks a large needle into the mother’s abdomen and then her uterus, in order to extract a small amount of fluid surrounding the baby. Fetal cells in the fluid are then examined. This test is not risk free. The literature I received from my doctor stated that the test carries about a one percent chance of miscarriage. (By contrast, my chances of delivering a child with Down syndrome were about one in three hundred.) I was not about to take such a risk, particularly with the heartbreak of a miscarriage not even a year earlier.
At my next medical appointment, I informed my doctor that I had decided against AFP, which has a high false positive rate. I didn’t want to raise any questions that only amniocentesis could answer, and I was unwilling to undergo such a risky procedure as amniocentesis. He seemed surprised and asked me if I was sure. I asked if there was any way to fix a problem that amniocentesis might uncover, and he said no, but that I would then have the option of “having the baby or terminating the pregnancy.” I told him that I would not have an abortion under any circumstances. This said, I believed that my choice would be honored, and that would be the end of that. Yeah, right.
In a tone of voice that seemed to suggest he was speaking to a slow-witted child, he said, “You just really need to ask yourself if you could handle raising a handicapped child.” Doing my best impression of an adult, I responded that I knew that raising a child with such challenges would be difficult, but I could not live with KILLING one.
After more discussion, my doctor and I came to the decision that genetic counseling would also serve no useful purpose, so I signed a form refusing the counseling and amniocentesis. Doctor Alvarez put a note on my chart so that I “wouldn’t be bothered about this whole amnio thing again.” Now I really thought that would be that. Wrong again.
Here is Part 2 in the saga of California medicine trying to stick needles in my abdomen.
