by Grace O.
It happens to most of us sooner or later. You reveal the details of your heartbreaking decision to a trusted friend, neighbor, coworker, family member and she responds with a soul crushing line like, “That’s not the decision I would have made!” or “I would love my baby no matter what!” or “But children with Down syndrome are beautiful and always so happy!”
While we’re waiting for her to sprain her shoulder patting herself on the back for her imaginary moral superiority, let’s debunk those all too common “Well I’d never” statements.
That’s not the decision I would have made!
There is only one person who can make this statement with a shred of credibility, and that is someone who received a definitive and severe prenatal diagnosis and decided to carry that pregnancy full term. If she had only a screening test indicating something might be wrong and didn’t follow up with diagnostic testing, her opinion doesn’t count. She had to have known beyond a shadow of a doubt that something was very wrong with her baby before she can compare her decision to yours. Only then can she claim that’s not the decision she would have made and have it mean anything. But even in this rare situation it’s still an apples-to-oranges comparison, because she isn’t you.
Statistics show that up to 94% of parents receiving a poor prenatal diagnosis do elect to end the pregnancy. Until an individual has proven otherwise by actually carrying a pregnancy with a serious prenatal diagnosis full term, statistically it is an extremely safe bet that ending the pregnancy is indeed the decision she would have made.
The vast majority of people claiming they “would never” haven’t faced this choice. They’re not morally superior, just ignorant and lucky.
In any case choosing to continue the pregnancy, while a difficult and valid choice deserving as much support as an abortion, is merely a different choice and not a morally superior one.
Many who arrive at our support group after terminating a wanted pregnancy had believed before the diagnosis that it was something they’d never do. This is a pretty common assumption and we don’t judge anyone for having once felt that way. Usually people hold this belief because they can’t imagine aborting a wanted pregnancy for any reason. Unlike those of us who’ve actually been through it, they’ve never really delved into what that specific diagnosis would mean in terms of suffering for their baby, or faced head on the emotional, social and economic impact of bringing a severely compromised infant into the world for all involved.
Once a diagnosis is in hand, giving birth to a child with severe or lethal birth defects is no longer hypothetical question with a romanticized or politically expedient answer. It’s a crisis and a conundrum. A very consequential decision must be made about this situation either way. Carrying to term will have profound implications for the baby, the parents and the family—there is no such thing as simply not making a decision after prenatal diagnosis. Deciding not to do anything at all is a decision, too.
There is no “wrong” decision, only a decision that is right for your baby, you, and your family. This is not something that anyone else has any right to judge.
Even those who believe they absolutely would terminate in the face of a severe prenatal diagnosis may change their minds when it actually happens to them. We’ve also met parents who decided to carry to term after a poor prenatal diagnosis, but chose to end a subsequent pregnancy for the same diagnosis as their living child. So the same person may not always make the same decision in a similar situation.
No one can really know whether your decision is the one they “would have made” or not until they’ve faced the same diagnosis and decision themselves.
The statement “I would never” can be particularly hurtful to those who’ve ended a wanted pregnancy due to a maternal condition such as hyperemesis gravidarium or clinical depression. It indicates the naysayer imagines herself a martyr, and may believe the person who aborts for these reasons is less of a woman or weak. Even if the naysayer has continued a pregnancy in the face of hyperemesis gravidarium, clinical depression, or other maternal health concerns, you can discount her opinion because she has no way of knowing if she was as nauseated as you, or as depressed, or how your life situation, support network and medical care compared to her own.
I would love my baby no matter what!
These are some of the most hurtful words ever uttered to those of us who’ve ended a wanted pregnancy. It presumes the worst of us. We did love our babies. We do love our babies. And we love them no matter what. The decision to end a pregnancy to prevent your baby from suffering is a loving decision. It is not a rejection. To misconstrue it as such is to completely misunderstand the motivations of those of us who felt the kindest decision was to prevent our child’s suffering.
But children with Down syndrome are beautiful and always so happy!
You may hear this old chestnut regardless of what diagnosis your baby faced. Too many people limit themselves to binary thinking when it comes to prenatal diagnosis; they believe there is either nothing wrong with the baby, or that Down syndrome was the diagnosis. This isn’t about Down syndrome further explores that wrongheaded assumption.
If there is one thing that is nearly universal across the experience of termination for medical reasons, it’s that we become experts in our baby’s diagnosis. We know the odds, the prognosis, the life expectancy, what surgeries, therapies and treatments the diagnosis may entail. Many will read books, blogs and support websites for parents of living children with our child’s diagnosis before making our decision. Certainly all of us talked it over with our medical care providers and specialists.
Our reasons for choosing to end the pregnancy may be as varied and individual as we are, but these are not decisions based on ignorance or baseless fears.
We are not alone in wanting to debunk the “always happy” myth about Down syndrome. We are in the company of the disability rights groups who support people who have this chromosomal triplication. Like all stereotypes, “people with Down syndrome are always happy” is flat out unfair to the individuals who are expected to live up to it. It fails to acknowledge them as individuals with a right to express a full range of emotions.
As for “always beautiful,” beauty is always in the eye of the beholder, and beauty is a shallow measure by which to judge anyone. To give birth to any child who would suffer just because someone believes they will be “beautiful” would be a strange reason indeed.
If you get blindsided by someone who is clueless, self-congratulatory or callous enough to second-guess your decision and smugly announce what they would have done, you’re well within your rights to walk away, hang up the phone, or give them a piece of your mind. No one has any business subjecting you to this self-serving claptrap when what you need is understanding and support. But what’s most important isn’t how you respond to them, but that you reassure yourself that you made the best, most loving decision you could and that no one else has any right to judge you.