Last weekend I was covering for another doctor and got called to see a lovely little baby girl who had been born with a meningomyelocele (defect in the lower spine/spinal cord) and was not breathing as well as she should have been. We admitted her to the ICU nursery, in an incubator, with CPAP to assist her breathing, and a full court press of medicines and monitoring. But she continued to deteriorate, and by 48 hours later it was clear that her brain lacked the capacity to regulate her breathing. Her somewhat fix-able spinal cord problem was only the visible side of a deeper and fatal nervous system deficit. We consulted the neurosurgeons, the chaplains, the parents, meanwhile reviving her multiple times in order to keep her alive. In the end the baby was discharged to go home to die. Her parents lived many hours away, and the intensive care had been expensive for them. But it would cost more to transport a body than a live baby-in-arms on the bus, so they were eager to get started on their journey before she died. Should we have let her go at the very beginning? Perhaps. It might have saved grief, time, effort, resources if we'd had a clear prognosis and plan to act on from day 1, instead of a several-day process of groping through a dim perception of her survival chances only to have to give up. But life is obscure at times, a process of trial and error and correction and change.
A similar story on Tuesday, though with a shorter course. I was sitting in nursery marveling at how calm and quiet the afternoon had been when nurses from the women's ward next door rushed in the door with a bloody little bundle of cloths and said a preemie had just been born, as it turns out in the mother's bed, from a precipitous labor (she had not even been in labor on admission for a urinary tract infection, so no one was prepared for the baby). As we unwrapped the cloths we found a blueish limp ball of baby, low heart rate, and went into gear for bagging breaths into his lungs, turning up oxygen, warming and drying. But a quick look at this baby showed he had many severe birth defects. Legs scissored up over his head, no openings for his urethra or anus, only a rudimentary tag of a penis, no hip joints, another meningomyelocele of soft fleshy cauliflower of skin on his back, a contracture of his arm, peculiar little clovers of split thumbs. His lungs were hard to expand, and we suspected that all his lower-body defects might be associated with absent kidneys, which would mean little amniotic fluid, which would man poorly developed lungs in utero, which would explain his blueness. But like the baby above, at that moment we didn't know if he could live or not live, and on the principal that God values every life equally whether it is contained in a perfect body or a crippled one, whether it lasts 30 minutes or a hundred years, we kept working to keep him alive until we could more clearly outline his anatomy. As it turned out our radiologist was able to come do an ultrasound which confirmed that he had not developed any kidneys. No one can live without kidneys. I went to get his mother, who almost broke my hands squeezing in pain as she was still dealing with bleeding and clots and stitches post-delivery. She didn't want to see him, to have a picture in her mind forever of a less than "perfect" infant, but her sister-in-law came with us to the nursery briefly to see him alive before we stopped resuscitating him. Then he died, quietly, winding down. Later I was the one to break the news to his father, which is always a holy and terrible moment, telling a parent that his child has died, trying to testify to God's love at a very bleak moment in someone's life. Again, this was not an outcome that was anticipated or smoothly planned for. We had to react to what we found, try therapies, adjust, make decisions. It would have been kinder all around to have realized the need for an antenatal ultrasound, to have known ahead of time and made a plan, but life did not work that way.
So this week I'm thinking a lot about this reality: life is iterative. The veil over glory, over reality, over the future, is thick. We walk out a few steps, then look around and adjust our course. Every day brings mistakes, from which we learn, and redirect. This is true on the scale of individual tiny lives of hours to days, as well as on the scale of two-month survey projects, or programs that represent the investment of years and lives. We gave a lot of responsibility to a head teacher once, thinking this was the best thing, who later turned out to be unable to lead the school in the direction we hoped. We started programs in nutrition that blessed many lives for many years, but later had to be suspended due to lack of personnel. A new team built very communal housing for survival, and later grew to value a bit more independence. So many times in life we cannot see far enough ahead to anticipate the outcomes of our actions, we attempt a rescue, invest in what looks good and right, only to find out by living a few more months and years into the process that we have to change course. New surveys, intensive care, hours of agony, closing programs, funding buildings, all these course corrections are costly to someone, on some level. It is natural to then assign blame somewhere, perhaps to God in particular, for not preventing our mistakes, for not protecting others from our painful learning process.
But somehow in the sovereign order of the universe, we walk by faith not by sight. We are called to hand over our two fish and be stripped of all our resources, without knowing if the multitude will be fed. We set out for a land unknown, without a road map. We pour into others' lives, without knowing which of the young people will break our hearts and which will become pillars of the Kingdom. We fiercely apply a face mask and squeeze the bag of oxygen, sometimes only to regret prolonging the inevitable. We get it wrong, and all too often the very people we meant to help are the ones to pay the price. The human condition seems to require this learning-by-living process. Life is iterative, but grace fills in the gaps and wrests some good out of every iteration.