Well, I’m going to disagree with you there. ECMO isn’t going to keep anyone alive indefinitely. The path of least resistance here would have been to keep him on the machine until he passes, which honestly can’t be more than just a few weeks away. He’s already lived remarkably long on the machine.
That might have been the reasonable compromise, but as you stated and as I read in the posted article along with others, the child has shown no improvement, his heart and lungs are not functioning, his airways continued to be blocked and his condition was and is worsening not improving.
In some cases there comes a point in time when further extraordinary life support measures are simply futile – continuing the use of the ECMO machine might extend his physical life a few weeks or even months but eventually he will die with or without the life support; infections, bleeds and ultimately brain damage are all very real and not at all uncommon complications with extended use of ECMO. Keeping him "alive" only to face those further complications, some of which would be excruciatingly painful would IMO be cruel given the sad fact that his condition is going to be ultimately fatal no matter what is done.
That is the sad and heartbreaking reality. And while I empathize and sympathize with the parents, it seems to me that they are not accepting that reality. I can’t say that I blame them for not giving up hope, but on one hand they seem to acknowledge that there is nothing more that can be done for him medically except for keeping him alive by artificial means while they wait for a “divine miracle”, but on the other hand, since no miracle has yet taken place, they seem to be no more willing to accept God’s decision not to, by miracle, cure their child than they are those of the doctors who are telling them that despite all their best efforts and extraordinary measure, that their child is dying.
I would also suppose that hospitals do not have unlimited numbers of such machines or unlimited numbers of the highly trained people necessary to run them. Beyond the questions of cost and who is footing the bill, the issue may also be one of continued use of such a machine in a hopeless and ultimately terminal case may mean that someone with a better outcome does not have access to it.
I would ask the parents if they are comfortable knowing that another patient, perhaps a child on the waiting list for a heart-lung transplant with a very real chance of recovery, doesn’t have access to the machine that is keeping their child alive, but only for a few more weeks while they wait for a miracle that doesn’t appear is going to happen. I would also add that if their faith in God is so strong, that He could perform such a miracle even after life support is removed.
“We pray for healing miracles because we want God to operate on our time table, not his.”
Medical science and the technology of advanced life support have progressed to the point where many people who were once hopeless and terminal can be saved. But as far as the advancement in medicine has progressed, the reality is that not everyone can be saved. That’s not a failure of medical science; that is just the reality.
If that's the case, then we don't really disagree at all. I was under the impression that ECMO could sustain someone for much longer than a few weeks, since I couldn't imagine why anyone (either the family or the hospital) would make a big deal about the situation if it were just a matter of weeks we're talking about.