When I first heard about the case of Charlie Gard, I thought that it would be something I could write about, having been through a similar situation of being in disagreement with our doctor on the best interests of our child, who would have died without treatment at his birth at 22 weeks and 6 days of gestation. But every time I sit down to type, I lock up, unable to deal with what a fraught case this is.
Briefly summarized, Charlie Gard is a baby who was born a year ago with a rare mitochondrial disease in Britain. He had to be put on a ventilator to survive. His parents sought out a doctor in New York who had an experimental nucleoside treatment that could be used on Charlie, although both the New York doctor and the British doctors agreed that it was unlikely to help. The British doctors did not want to allow Charlie to be transported, and they and the parents went to court, and the courts sided with the doctors. Charlie died about two weeks ago.
I find it really hard to write about this because the case is about someone like our son, who the doctors said shouldn’t be saved. In the past year, I’ve had two people write me whose 22-weekers died after being denied care, so the scariness of the close call has not faded. And yet, in Charlie’s case, the doctors were probably right.
As big of an advocate for parental choice as I am in cases such as these, doctors still must act in the child’s best interest, even if they and the parents cannot agree on what is in the child’s best interest. As I was talking with Dr. Mark Hudak, a neonatologist from Florida with whom I wrote an article on parent-physician partnership this year, he said that in his experience, he’s had parents begging for treatment on a 20-week preemie, and begging for no treatment on a 28-week preemie, and in each case, he had to go against the parents’ wishes, instead looking to the best interests of the child. The 20-week preemie was almost certain to die, and treatment would have been futile, and the 28-week preemie was very likely to live with treatment.
The BBC posted a couple of articles on the topic, “Reality Check: Why Don’t Charlie Gard’s Parents have the final say?” and “Charlie Gard has 10% chance of improvement, US doctor claims.” These articles explain that in the UK, the law falls in between letting doctors and parents have the final say, and that treatment the parents wanted to provide Charlie was highly unlikely to work. In effect, he would have been experimented upon, and that last point is why I think it was probably the right choice to forgo treatment.
As I’ve been reading various articles about the ethical dilemma this case posed, one of the clearest has been “Hard lessons: Learning from the Charlie Gard case,” in the University of Oxford’s “Practical Ethics” blog, in which he points out multiple ways the case could have been sped up (and kept out of court) and ethical concepts of harm could have been clarified.
The story also made me remember a classmate of Gabriel’s when he attended a birth-to-three therapy program. Jackson was his name, and he also had mitochondrial disease. Gabriel was 19 months old, and Jackson was soon to turn 3. While Gabriel was learning how to walk (late), Jackson was there to try exercises to get him to raise his arms and head. Frequently, he cried, but had a gurgling sound to his cry because he couldn’t clear his throat. He, like Gabriel, had an electric pump that fed him through a g-tube. When Gabriel heard him cry, he frequently looked concerned and found toys to bring over to Jackson. One day, as we were leaving the building, a therapist was holding Jackson, and she picked up his arm to wave goodbye to Gabriel, and Gabriel waved back, the first time he’d done so on his own. That wave goodbye was permanent — a couple of weeks later, Jackson died of a respiratory infection.
At our next appointment at the therapy center, I found out about Jackson’s passing, and sat in the car crying for a little while as I knew Gabriel was unlikely to remember his friend. I called my wife on my cell phone and she reminded me that God takes each of us at the time that’s best for our salvation. As much as I want to write about the possibility of miracle babies proving everyone wrong, there does come a point where it’s time to let go.