Feelings of guilt and regret about choices sometimes go hand in hand. We commonly associate regret with feelings about our past actions. If your child has an inherited disorder, you may experience guilt at having passed it along. You may have this experience even if you were unaware of the condition; for example, you may wish you had known to screen for it. Understand that you have done the best you could with the knowledge that you had.

There are different kinds of regret associated with decisions. Feelings of regret may arise at different times, and whether or not the decision feels important at the time it is, or was, made. This is all very normal.

Sometimes we question a decision, and sometimes we wish that a different decision had been made. “Decisional regret” is something experienced when realizing or imagining that a different outcome might have occurred if you had made another choice. You may feel decisional regret if you choose a path of care that doesn’t produce the results you hoped for.

There is no time limit on decisional regret. It may occur almost immediately, or even years after decisions have been made. If (or when) we experience decisional regret, it is with a sense of loss for what might have or could have been. It is not uncommon to wonder if you did the right thing, or not enough, or too much. Conversations with professionals can help you process your feelings about this.

The fear of making the wrong decision in the (near) future can produce “anticipated (or anticipatory) regret.” This is fear of being unable to cope with any consequences that might occur, such as unintentionally causing your child’s condition to worsen. It is also the fear that perhaps a “better” option will appear in the future and will be unavailable because of prior decisions.

The fear of making a choice can be paralyzing. As challenging as decision-making can be, though, it also is empowering. The clearer your goals for your child, the better prepared you will feel to work with clinicians to make the critical decisions. Be sure to revisit your goals from time to time, especially if there are changes in your child’s baseline.

Know, too, that sometimes there simply are no good choices, and you must make a decision nevertheless. Remember that you are doing the best you can with the information you have at the time. Believing that you have the necessary information is thus very important. If you are unsure, speak with members of your team. If you don’t understand the information or feel uncomfortable, ask for additional help to get clarity.
 
And know that some regret and perhaps some guilt, is almost inevitable. You may find it helpful to think of an undesired outcome as a disappointment rather than a regret. Be compassionate with yourself.

The section on Decision-Making presents helpful ways to manage the decisions you will need to make.