If you have ever had a “Do Not Resuscitate” order (also known as a DNR) shoved in your face, you know that it is an experience you are unlikely to forget. If the DNR form in question concerns your child, well, let me tell you, that makes it doubly worse. I’ve had the awful experience three different times for my Mighty Z, and I remember each and every time vividly.
My husband and I were first presented with a DNR when Mighty Z was three months old. It happened again when she was six months old, and it happened last when she was one year old. The doctors who presented us with those DNR forms all pretty much said that she would have no quality of life and that we were young and could have more children. They said that they could make her comfortable so she wouldn’t suffer. The doctor who recommended this course when Mighty Z was six months old didn’t stop there, though. Instead, in order to show us what the rest of her life would be like, he set up and accompanied us on a visit to a bedridden 17-year-old kid in state foster care who was living in unquestionably horrific conditions. Even though that poor boy suffered from a different disease than our Mighty Z and was born to a family that was unable (or unwilling?) to care for him, the doctor assured us that that was what we and Mighty Z had to look forward to, so it would be easier to just let her slip away.
Really??? Not so much, Doc. I was horrified and offended that those doctors would even suggest a DNR because it has never been evident to me that Mighty Z was headed for a life not worth living. That being the case, I have never signed any form that would relieve her physicians from the necessity of saving Mighty Z’s life.
I am sure many parents of children who are complex have also at one time or another been presented with a DNR, as it seems many doctors gravitate to a DNR and try to lead families of children who are medically complex down that path. In my opinion, they often do so because it is an easy “get out of jail” card for them. Looking back on my own experiences and the anecdotal evidence of my friends’ stories (some of whom are facing the issue right now), I am shocked that doctors still bring the subject up and recommend this course so regularly.
My cousin was recently offered a DNR concerning her child who has Transverse Myelitis, and she asked me when was the right time to sign it. Here is my answer:
There is no answer.
The decision to sign a DNR is a very hard choice to make, and only the family involved can determine whether or not it is the right course for their child. Only they know when the time is right to sign a DNR. I don’t think it is something you can plan for—I think that when it happens it happens.
We have to support and respect each other’s journeys. I know many children who have made an impact on the world around them simply because their parents would not sign a DNR. I also know several wonderful mothers who when faced with a DNR, signed it. Who was right? Who was wrong? The answer is that they all were right, as only the families involved knew when the time was right to let their child go.
As for me, I’m so glad I didn’t sign a DNR concerning Mighty Z when I wasn’t sure it was right. As you can see for yourself, Mighty Z’s is still a life well worth living.