She Brings Joy : Simon's Law

Charlie Gard: Who Has The Right To Decide?

Over the last week I've cautiously watched events unfold in the U.K., regarding 10 month old Charlie Gard.

For those who don't know who Charlie Gard is, a very quick synopses: Charlie has an extremely rare mitochondrial disorder which will eventually lead to the loss of all muscle function. His parents would like to try a non-invasive, experimental medical trial in the US which has proven to be beneficial for children with similar mitochondrial disorders. Great Ormond Street Hospital, where Charlie is currently being treated, has successfully sued to deny the treatment and remove Charlie from his ventilator. His parents have lost custody of him, and his care is in the hands of a child advocate who has sided with the hospital.

(If you would like a more detailed description you can read one here.)

Whenever there is potential suffering, especially involving a child, the need to be cautious in whatever treatment is utilized is paramount. However, contrary to common assumption, there is absolutely no indication that Charlie is suffering- even medical reports do not purport to know if he is in any pain, just that there's no way of determining if this is the case.

In addition, treatment for suffering is pain management. If there is concern regarding his comfort, then administering the appropriate medications to mitigate any pain would be the answer to this concern. It can be done, even for a small baby. Suffering isn't ended by death, only life is.

More importantly, suffering in itself is not a valid reason to end someone's life -- even an infant -- because make no mistake: he is alive. This isn't about removing life support from a clinically dead human being, but removing ventilation from a human being who (as Connie's last photo showed) is responding to stimuli. There are many individuals around the world who rely on ventilation, both temporarily and permanently, to survive and who thrive.

(Please note that Charlie's family has been prohibited from showing certain media online, so we have no idea what state he is in now.)

Since the story about Charlie has broken, there have been a number of other stories making the news, of children in similar circumstances. Babies Alfie Evans and Harry Thomas Douglas are also facing similar fights: both currently vent dependent, but with no diagnosis for either, prognosis has been impossible to pin down. Doctors are fighting hard to turn off their ventilation as well, and parents are fighting just as hard to keep them alive, in hopes of receiving a diagnosis which could lead to a solution.

When we see cases like this, we have a knee jerk reaction: the idea of an infant suffering is unbearable. It is heartbreaking to see a newborn hooked up to wires and tubes. I know- because this is my daughter, attached to all types of machinery. It's not pretty, and I understand the visceral reaction strangers can have to this type of image.

But- when I see these photos, I see her pink and full of oxygen.

I see her alive.

Sometimes intense medical treatment is necessary to come to a place where a baby can be stabilized and a situation can be evaluated. A photo of an intubated child tells very little about the condition of the child involved. It can be a harbinger of death, or an instigator of life.

Unlike Charlie Gard's parents, we knew rather quickly the outcome for our daughter would not be a good one (for us, at least). We made the difficult decision to remove life support, with the understanding we were only prolonging the dying process. This is different from Charlie's parents, who are prolonging life in hopes of a treatment which has been successful for similar cases. They understand this may not be a solution, and that Charlie may die even with the treatment.

This brings us to the crux of the issue:

If a child is born with a serious birth defect- who gets to decide whether the child will receive medical treatment? Should a doctor or hospital be the final arbiter? Should the parents choices supersede the choices of medical professionals?

The bigger question-- is it ever acceptable to end the life of a child, based solely on the possibility of suffering, or their level of disability?

In Charlie's case, the hospital sued for custody so they could turn ventilation off. Charlie no longer belongs to his parents- he's become a ward of the state, with a legal guardian who will ultimately make the decision when to remove his lifeline. His parents must sit by and watch their child die, not interfering for fear they will be removed from his presence if they object, or possibly even show too much passion.

During our own experience dealing with what was perceived to be a lethal diagnosis, we ran into many medical professionals who I believe would have fought hard for our child to be denied care. One particular physician told us she believed we were wrong in our assertion that Beatrix didn't have a genetic disorder (we had a full genetic panel done.... she did not have a genetic disorder), and that should we continue the pregnancy she would refuse to treat Beatrix at birth. She felt it was abominable that we were even considering treatment, and she told us this in no uncertain terms. We had the option, because Beatrix was still in my body, to walk away from this physician and find another who was more sympathetic to our situation. But if she's been born, what would have happened had we been forced to utilize her services?

Doctors do have personal mores which guide their clinical decisions. We found in our experience that the overwhelming consensus, when it came to infants with serious anomalies, was that allowing them to die by denial of treatment was the preferred course of action. They are human beings who may have strong opinions about assisted suicide and euthanasia, both passive and active.

The questions which have been raised in the Charlie Gard case are not so much questions about the limits of science, but about the limits of people's abilities to let go of a situation they aren't ready to give up control of.

This isn't necessarily about whether it's appropriate for a hospital to overrule a parent, but whether it's appropriate for a stranger to interfere in a family's life and death decisions. There is no abuse happening here, and Chris and Connie have no delusions about the gravity of the situation. They comprehend that even with treatment, Charlie may die.

While the world has focused on Connie and Chris' inability to "let go", no one has even thought to question whether Charlie's physicians aren't really the ones who are having a difficult time letting go, and that's the saddest part of all.