We started writing this post when Elizabeth was pregnant with Obie. While it didn't end up being something we had time to finish and publish during the pregnancy, we still think it's important to share.
While we waited for beastie's prognosis information, a lot of scenarios ran through our heads. What if the little guy had a condition with a life expectancy of less than a month, and that life would be filled with surgeries, oxygen tubes, poking and prodding? What if he had a condition with a longer life expectancy, but no possibility of ever being able to take care of himself? What if no matter what the life expectancy was in length, it was guaranteed to be filled with physical suffering?
After the amnio and array testing results, we didn't think the prognosis was so serious, but for a few weeks in the second trimester it all felt possible.
If the diagnosis was something more serious at that point, we can't tell you what we would have done. No one can make that decision until it's placed in front of them. So why are we bothering to bring it up? Because everyone should have the choice.
Elizabeth is lucky that she lives in California, where there are not unconstitutional bans on abortion. If she lived in Alabama, Arkansas, Indiana, Kansas, Louisiana, Nebraska, North Carolina, North Dakota, Oklahoma, or Texas, there would have been no options. Access to abortions in these states is severely limited at or around 20 weeks, which is right about where we were when they found beastie's omphalocele. As we waited for more information on beastie's condition, even more states would have imposed additional restrictions.
It was bad enough waiting for the results of beastie's early tests. The sympathy for women who live in states with limited or no options was overwhelming. Every woman and every family needs to make their own decisions, and it is not the place of lawmakers to insert themselves into that conversation. The thought of being forced to continue a pregnancy that was guaranteed to result in suffering for the fetus and the family is horrifying to Elizabeth. She couldn't imagine bringing a baby into the world simply to suffer, and emotionally the depression of having to take a pregnancy to term with such a cloud of sadness was impossible to imagine.
Some people will take every pregnancy to its natural course, regardless of medical information. That's their choice. Others find it more compassionate for the fetus and the family to end a pregnancy with found medical issues (this is called "Termination for Medical Reasons" or TFMR). Still others have more reasons why bringing a baby into the world is not a good choice for them at that time. It isn't our place to judge or to dictate. It's our place to be compassionate and supportive of the women in our lives and the choices they make.
Upon reflection, if we knew the severity of Obie's problems in the second trimester, we can't say what we would have done. We would have definitely considered TFMR, and that would have been a very sad and horrible thing to go through. In addition to losing our beloved son, we would have likely also dealt with judgment and scrutiny from family, friends, and acquaintances. This would clearly not have been a helpful response. There should not be shame in terminating a pregnancy. The choice is ultimately up to the woman whose body sustains the fetus. Is her body ready for this pregnancy? Is she ready to raise a living child or bring a pregnancy to term to give up the child for adoption? Is the fetus ready for a life outside the womb? These are all questions she can consider, and if the answer to any one of them is "no," she must do what she thinks is best.