Informed decisions

There was a discussion on one of the Facebook groups I belong to on how and when to educate one’s child on surgery. I responded there with a simplified version of what follows, but I have more to say (as I usually do).

Jessica and I have educated Namine about her birth defects on what I think of as a sliding scale. When she was younger, we started simple (at that point, not even mentioning the names of her conditions), and as she’s grown, we’ve explained in increasingly complex detail. This allows her to understand on her own terms, but also in a way that’s personal to her; it’s not just “I have to take this medication because Mommy and Daddy say so.”

This has been true of her medical conditions, medications, and also surgery. By the time she needed her third heart surgery, she knew that she had two heart surgeries and knew the third was coming up and (in an abridged manner) why it was necessary.

When Namine was two years old, she had surgery on her feet. She was born with club feet, and they needed to be corrected if she was to walk on her own. Obviously, Jessica and I made this decision for her.

To make a long story short, the procedure was botched badly by the operating doctor, who then lied about the result both to us and in his report. Ever since, Namine’s feet have been in near constant pain.

Jessica and I faced a hard choice. If Namine’s feet couldn’t be fixed, she would never walk. And if she never walked, it might benefit her to have her legs disarticulated — to have her legs removed at the knees. It was a choice we didn’t want — no parent should be asked that — especially because Namine already loved to stand as much as she could.

Namine and her walker in 2012, three months before the second foot repair

Namine was only three, but she knew what she wanted. It was her choice to have the surgery again, despite the pain, because if she has one dream, it is to walk on her own someday.

Namine paid for her choice, and dearly. There were complications with her left foot, which she nearly lost as a result. More than once Jessica and I have wondered if we made the right choice. Namine still has frequent, if not constant, pain in her feet and legs.

But we can see how hard she works in therapy. There are bad days, hard days. Days of tears, of crying, of feeling like she can’t go on. But she gets back up and tries again. Contrary to everything she’s been through, all the pain she’s in, she remains committed. And we know we made the right choice. We know she made the right choice.