To Fight, or to Let Pass

Last night I saw the documentary film Little Man, about the birth of baby Nicholas, born 100 days premature, at less than 1kg, and the struggle to keep him alive.

I acknowledge that parents have a right to decide how much effort will be put into resucitating and keeping their child alive, but consider this. At age 9 months, his parents refer to Nicholas as the $2.7M baby – that’s how much his care has cost to this point, mostly paid by insurance. From that point on he continues to need 24/7 nursing care, which they explain, is paid for by the state of California (our taxpayer dollars at work), and almost weekly visits to the emergency room. At age two and a half, he has a super-cute smile, barely walks, barely sees, barely hears, needs oxygen to breath, is given food intravenously, and is probably retarded, although the precise degree of retardation cannot be determined. He seems to still need 24/7 nursing care. Although it’s not specifically spelled out, at this point in his life I would estimate that he’s at least the $5M baby. And at age 20? Probably $8-10M.

At some point the filmmaker (one of the two mothers, this is a lesbian couple), acknowledges that part of the confusion is that today in an ICU you can keep almost any baby alive for as long as you choose to, the problem is that as you do that, the disabilities pile up. The ICU is not a womb, and underdeveloped lungs, large amounts of antibiotics, and constant resuscitation, lead to appaling physical and neurological damage that is only fully evident months and years later.

There’s another amazing line in the documentary. The State of California considers EVERY baby born at age 26 weeks or earlier to be disabled – and therefore eligible for 24/7 care. The state is acknowledging that even if you keep a pre-26 week baby alive (and keep-alive ages are getting younger and younger), that baby will almost certainly be disabled. As the filmmaker acknowledges, that’s something that’s hard for the parents in the ICU, seeing their tiny baby, to believe. To them it’s just a struggle for him to survive. They feel as though if he survives everything will be alright. Wrong…

Bottom line, the concept that we’re enabling younger and younger fetuses to survive outside the womb is largely a falacy. We’re allowing them to survive, but at what cost, and with what disabilities.

And the real bottom line is that, unfortunately, this should not be just the parents’ decision to make. There’s no reason the taxpayers of California should be paying for this baby’s 24/7 nursing. I and many other people would never vote to keep such an extremely premature baby alive, and have no interest in paying for the consequences. And there’s no reason the payers of health insurance premiums should be paying for ICU time and post-ICU medical care for a baby that was born so small. People who want such insurance should pay for it separately. People like me, who think that keeping such a small baby alive is cruel and unusual and unnatural, should be able to opt out.