Slate has a piece worth reading up about Rick Santorum and prenatal testing. It is in some ways similar to mine: by a mom who also waived diagnostic prenatal testing and ended up with a kid with a Ridiculously Rare genetic disorder, who also adores her kid, who also is broadly sympathetic to requirements for availability of funding for prenatal testing. There are a few differences between our stances, too. She has fewer mixed feelings on the topic. She is, apparently, less conflictedly pro-choice. While I am relieved that I didn’t get a prenatal test and thus perhaps an abortion, she wishes she had, and wishes she had an abortion. Of course, her kid’s syndrome is very very different from mine. My kid has a 90% chance of living to adulthood, her kid will soon die. My son is developing, however slowly, and while he will stop developing at far too young a developmental age, he will likely not degenerate. Her son is degenerating. Although it’s hard to know, I believe under the same circumstances I would have wished I had an abortion, too. She herself is disabled; I am not. It’s a very moving piece, and my heart goes out to her.
A minor quibble in (gulp) defense of Rick Santorum. She says:
Rick Santorum, I would like you to meet my child. You should see how beautiful he is; you should see how he suffers, how his parents suffer…I believe that we need a more nuanced discussion about what quality of life is, and that it should be a woman’s right to choose to terminate a pregnancy when the path of her child’s life is as compromised—and as terrible—as my son’s.
Rick Santorum has his own child with a terminal genetic disorder. Say what you will about his views on the matter (and I too disagree with him), they do not come from lack of intimate familiarity with the issues at hand.