Why This Loss is So Hard
There is unfortunately no shortcut through the grief that follows our decision to end a wanted pregnancy following a catastrophic prenatal diagnosis.
It can seem harder than other losses both because there is a decision involved, and because it involves us physically so much. The loss is from our very bodies; the baby we lost was still physically a part of our being. So in addition to all of the emotional pain of the loss of our hoped-for child, we have the physical loss of our pregnant state. Everything suddenly changes for us physically - from our hormone balance to what we can eat and wear, reminding us constantly of our terrible loss. We also have a due date looming large to remind us that in this period we still should still be pregnant, yet we aren't.
Unlike miscarriages, which commonly take place in the first trimester, we don’t usually get a prenatal diagnosis earlier than 17 weeks when we are well into our second trimester. The “average” gestational age at which our heartbreaking choice is carried out is around 20 weeks. By this point, we are well into planning and preparing for a new baby. Pretty much everyone we know may be aware of the pregnancy by then. This opens us up to their curiosity, prying, inappropriate comments and even well-intentioned sympathy that brings us to tears when we’ve been trying so hard to hold ourselves together.
The only type of loss that comes close to this is late miscarriage. The difference from that is that our loss involves a decision no mother should ever have to make. A decision that, no matter how logical or compassionate or utterly justifiable, is still excruciating to make and to live with.
Another thing that makes it hard is that other people in our lives most often haven't been through it and can't even imagine what it is like. They can't relate to our loss, so they just want to change the subject, tell to get over it, or say things like we’re “lucky” we found out beforehand. Their inability to relate makes them uncomfortable around us and the result is they may say or do inappropriate things that add to our pain. Or they may just avoid us all together, resulting in loneliness and the feeling that no one understands.
To make matters worse, a catastrophic prenatal diagnosis is every expectant mother's worst nightmare. Seeing it actually happen to us threatens their comfort zone of "it can't happen to me." Those of us in the US live in culture with a bias against abortion that is unmatched in other developed countries. Those who refuse to accept it as anything other than selfish and entirely unnecessary are painfully confronted by our situation and they may resent us for that. They want to continue to believe that a catastrophic prenatal diagnosis "hardly ever" happens. (Or they fantasize that if it does, it will either be a mistake, or fixed by a miracle, or end up as a heartwarming People Magazine triumph-of-the-human-spirit cover story, casting them or their disabled child as the hero.) The reality of our loss spoils those fantasies for them.
Because so many people are emboldened by our so-called "culture of life" to harshly judge anyone who ends a pregnancy no matter her reason, we may be justifiably afraid to share the details of our loss. The result can be in feelings of isolation, paranoia and even feelings of fraudulence.
Most pregnancy books and magazine articles simply gloss over the possibility of bad prenatal test results with chirpy reassurances that it's very unlikely to happen. That provides no comfort or guidance to women in our position and just reinforces the "freak" "bad luck" nature of this loss. It also provides others with no clue as to what we might be going through, or how they can help.
Having to make a heartbreaking choice seems harder than other pregnancy losses, because it really is.
It is for this reason that this Web site exists. It was created by Maribeth Doerr, who understood the pain and isolation felt by women facing this particular type of loss. It is maintained by volunteers who have personally experienced the same kind of loss and want to help others facing it. It is meant to be a safe place for you to find information, support and encouragement as you grieve and heal from your tragedy.
We maintain a list of support groups, both local and online, where you may find others who are facing a similar grief.