Maternal blood tests that look at the alphafetoprotein levels can suggest the presence of neural tube defects like spina bifida, a deformity of the spinal column, and anencephaly, an absence of all or part of the brain and skull. This test can also be a marker for Down syndrome. More invasive tests include amniocentesis and chorionic villi sampling. These allow the direct examination of fetal chromosomes in order to detect genetic abnormalities. These tests are more accurate, but they also carry more risk for the unborn child. The decision to undertake any form of prenatal testing must weigh the risks against the potential therapeutic benefits derived from the information provided by such procedures.
While prenatal testing offers the opportunity to correct some abnormalities or to prepare to adjust to others, it is unfortunately often utilized to screen for diseases and abort unborn children who are deemed defective. In 2007, the American College of Obstetrics and Gynecology (ACOG) changed their recommendations for prenatal screening from offering tests to pregnant women over age 35 to offering them to all pregnant women. Their rationale was that while women over age 35 had the greatest risk for conceiving a child with Down syndrome, most children with Down syndrome were born to women under the age of 35. The expanded screening would allow for these cases to be detected prenatally.
Currently, 92% of all children with Down syndrome in the United States are aborted…
When my wife was pregnant with our now 15 year old son, her doctor was pushing real hard for her to have the amniocentesis performed. Since we were not going to have an abortion if something was wrong, there was no reason to have the test. Given that my wife was 35 at the time, and therefore at higher risk for Down syndrome, the doc was pushing REAL hard. I looked up the stats on miscarriage, which are somewhere around 1 in 300, so I asked him, “Would you want to risk that for no reason at all?” We told him we understood the malpractice insurance issues, and we would happily sign anything he needed absolving him of all genetic problems.
There’s another side, #1. I would want to know so I could plan and prepare. If I was going to have a disabled child, then I would be investigating the treatments, special care, and accommodations required. Down Syndrome babies most often have a heart defect requiring surgery, for instance. And they are capable of learning so much more than they were previously given credit for — they can be very high-functioning, hold a job, live independently with just a bit of assistance, etc. But the special interaction, accommodation, and teaching must begin on Day One.
I would also want that pre-natal time to assemble a support system and spiritual care for all of us. Once the initial surprise and grieving was managed, we could then prepare to welcome that baby with joy and dedication. I can’t imagine how horrible it would be to give birth and then have everyone react as they would for a grave tragedy.
I think it’s wrong for anyone — and especially doctors — to assume that if you do the testing then you are quite open to abortion. That shouldn’t be the case. But, then again, I am the type of person who wants to know and plan things ahead of time, as much as possible. That would especially be true if there was a heightened chance of having a child with disabilities. Post-partum would not be the ideal time to just begin making plans and accommodations.
This is all from a parent’s POV. There are compelling medical reasons to want to know and prepare, as well, and I’m sure the obstetrician would appreciate a heads-up. There are prenatal treatments and even in-utero procedures and surgeries that can help to improve the prognosis.