CPN | What anguish looks like: when parents realize they aren't in control. But neither is anyone else.

What anguish looks like: when parents realize they aren't in control. But neither is anyone else.

I have been following the Charlie Gard case in England – the infant whose rare and debilitating genetic condition known as mitochondrial DNA depletion syndrome meant that, among other things, he has required artificial ventilation to breathe, which the hospital and ultimately the court felt was causing physical suffering. Perhaps you have been following it too. And perhaps you too feel as I do, which is distressed. Distressed for absolutely every player in the story.

First, of course, for little Charlie, whose short life has been filled with hospitalization, medicalization, and physical struggle. So much struggle.

Second, distress for his parents, Connie Yates and Chris Gard. I cannot even imagine. When I try to put myself in their shoes, I can’t really. The situation with my own daughter was so very very different. Most importantly, if I have learned anything at all with Courageous Parents Network and the stories I have heard, it is that every child and family is different and we are not to judge what is right for an individual family. We focus always on Quality of Life but quality means different things to different people. To some, it also means quantity. Parental love is the biggest love of all and has many shapes and sizes. We shouldn’t define it. We know it when we see it. Charlie’s parents love him very much.

Third, distress for Charlie’s medical team at Great Ormond Street Hospital, that felt it was acting in Charlie’s best interest and wanted only the best for him. These people did not want to pit themselves against his loving parents. To work with medically complex and seriously ill children is heroic, selfless work. I have found that the people who commit themselves to this work are especially generous of spirit, very wise in their soul, and deeply emotionally intelligent. They love the children. They are committed to the families. I cannot imagine what this case has done to them.

So there is my distress. I am also confused. On one hand, I stand with Charlie’s parents in believing that, in the absence of parental psychosis, the parents’ wishes for their child should trump everything except the wishes of the child him or herself should the child be able to express them (which Charlie was not). On the other hand, I appreciate that there was a process and judicial system in place to protect the perceived best interests of the child. Children deserve every protection. Suffering is really hard to measure, especially in infants who cannot communicate. I’m glad that there were a lot of people trying to protect Charlie. I’m just sorry they didn’t agree with each other.

But I think the most distressing of all, for me, is an utterance from Charlie’s mother: “We’ve had no control over our son’s life and no control over our son’s death.” This brought me up short. Control. Control is ultimately an illusion. But parents believe in it. We believe we can control our children’s outcomes by what we feed them, how we school them, how we support their interests, how we direct them. And certainly we have influence. But we don’t have ultimate control.

Parents of children diagnosed with a serious disease learn this the hard way. With the diagnosis, we are immediately put on our heels. Wait, this isn’t what we dreamed about! This isn’t what was supposed to happen. Why did this happen to me and my child? The moment that something is wrong, parents learn that they are not in control.

But neither is anyone else in control of the situation. Rather, it becomes a shared enterprise of muddling along, the parents and medical team figuring out together what is possible; figuring out what matters most to the child, parents, family; communicating effectively to try to have those two things meet—where what is desired meets what is possible and together become what is realized.

This meeting point is the vanishing point on the horizon — it’s always the goal and we are always moving towards it. And hopefully we get there. With the help of palliative care, my husband and I got there with our daughter. We felt we had control over how and when and where she died. And that took much of the edge off of the brutal fact that she had to die at all, a fact over which neither we nor anyone else had any control.

So I sympathize with Connie Yates and I am so so sorry for her and Charlie’s father Chris. How they remember their son’s life and death is going to be very painful, more painful than it needed to be. To me, this is as sad as Charlie’s struggle and death. This anguished story will stay with me always. I hope no family going forward will know sorrow quite like this one.