On The Waters

Tomorrow we go to St Louis. I don’t know where this is going to lead: who does?

The facts: Flynn has two very small lungs. The ratio has been quoted variously from .65 up, depending on which doctor and which method is used, but it is very poor at best and impossible at worst. Most of his liver has entered his chest, and some intestines as well. There may or may not be a hint of an amniotic band or a skin tag at the back of his head, which all things considered they aren’t worrying a lot about just now.

His prognosis as a baby without intervention is poor. He would almost certainly be put on ECMO, the heart-lung machine, to avoid what would probably be a quick death from suffocation or heart failure. Once on ECMO, his chances would again be poor, and even survival would not necessarily mean an easy life.

They have been very honest with us. The procedure is experimental, and due to the invasion of the womb risky in and of itself. Flynn will be the third child to undergo it ever. There is some controversy at this point about it, but to my mind it sounds the most reasonable and gentle way to approach it. The lungs will retain their self-generated fluids within instead of expelling them into the amniotic fluid and the building volume of fluid in them will allow them the ability to grow against the pressing mass of the liver. The other two children had lungs much closer to normal size at birth, so indications are that this can work.

But there are no promises, no assurances, no bargain to be made. Things are to be what they are to be.

I do not pray, I do not ask, I do not hope. Flynn is in the hands of forces far greater than himself, lying curled in the womb like a small sailor in a little boat bobbing in the deep water, unable to see above the crests of the waves to the shores that may lie beyond. If his boat lands, it will not be my steering that guides it, and so I have to trust that whatever pilot is on his boat’s deck is wiser than me.

So we go to St Louis, and Friday my wife and my second child will take the first step on a long road.