This is not the traditional Christmas story, but it expresses the many emotions we all feel at this time of year. I am grateful to Dr. Wells Shoemaker — winemaker, artist, hiker, writer, and of course physician — for sharing this story.
Mrs. Renteria’s fourth pregnancy was plagued by bleeding, unusual pain, and delayed growth of the fetus. Back in the early eighties, knowing the gender of an unborn baby was still a novelty, but the complications merited an ultrasound. The Renterias were ecstatic to hear that they would finally have a boy. Because of the troubled pregnancy, the obstetrician asked me to stand by for the delivery a few days before Thanksgiving.
Jose Luis took his first breath immediately, but he soon needed help to fill his lungs. It took some discipline to notice his poor circulation, as the first impression was dominated by a gaping cleft of the lip and palate. The parents appeared stunned by the look on their baby’s face, and mine, in the delivery room. We whisked away to our new NICU, using our shiny new tools and our brand new flow charts. An hour later I told Mr. and Mrs. Renteria that Jose Luis’ heart was not normal, and it appeared to be failing before our eyes. The baby would need to be transferred immediately by airplane to Stanford for intensive cardiology services.
Jose Luis’ three older sisters—ages 3, 4, and 5—were quite small, like both parents, with delicate bright faces, sparkling eyes, and jet black hair in impeccable braids. They seemed naturally comfortable among adults, flashing a mixture of curiosity, mischief, and coquettish charm. In fact, they so closely resembled each other in appearance and style that one could easily imagine them triplets, born a year apart. They appeared to communicate with each other without words, but they spoke enchanted Spanish to me. I had come to know them all rather well, because, apart from the natural gift of beauty, they shared the trait of dysfunctional Eustachian tubes. Many of their nights were spoiled by bitter earaches, but I never saw even the track of a tear in my office.
Mrs. Renteria worked in a clerical job well below the station and pay that her intelligence, talent with people, and fluent bilingual skills would have commanded had her parents come from Michigan instead of Michoacán. Mr. Renteria had a gentle face with a permanent smile etched upon vaguely Mayan features, sporting a few scraggly whiskers. Beneath his shirt rippled a powerful back which he applied to tall stacks of strawberry lugs six days a week. His deeply stained hands felt like oak bark, yet he handled his daughters like soap bubbles on an April Sunday.
At Stanford, the experts determined that Baby Boy Renteria suffered from an inoperable heart defect for which there was no hope of survival. The faculty predicted an inexorable downhill course with an abrupt end in a few days, perhaps a week at most. These pronouncements were as miserably gritty for the Stanford doctors to utter as they were for us to hear. We decided to transfer Jose Luis back to Watsonville to keep the family as close together as possible.
When Jose Luis returned, we challenged ourselves to address the many aspects of his care that didn’t relate to his death sentence. We dressed him meticulously, tucked the blanket into the isolette with a perfect fold, checked his temperature every hour to make sure he was warm, wrote down how much milk trickled in through his gavage tube, and made certain there was no trace of a rash when we changed his diaper. We talked about how his eyes could focus better every day as his retinas matured, complimented him upon his sense of smell which, of course, is fully developed at birth, and demonstrated his remarkable grip strength. We noted that his hair was curly, unlike his sisters’. We congratulated the mom on her rapid learning with tubes and syringes, charting “ins and outs,” and her casual comfort with the monitor electronics.
Twice, both times on weekend days when I wasn’t on call, Jose Luis had gray spells which presaged an imminent death. Both times I came in for hours while Mrs. Renteria held the baby, grappling with the awfulness of the inevitable…and both times Jose Luis kick-started his flagging myocardium and greeted the nurses on the next shift with a wet diaper. The one week prognosis passed.
The Renterias decided they wanted Jose Luis to come home.
Nobody knew how to “do hospice” for babies back then (well, I still don’t), but it seemed that the critical elements were warmth, love, and food, with disposable diapers and some tangible assurance that the family had not been abandoned. I agreed to visit them daily.
For a while, Jose Luis improved against all predictions. One day, he even showed some pink in his cheeks. Other weeks went by. The three sisters did not seem to notice the deformities and the yellow gray color of Jose Luis legs, but rather spent hours decorating the baby.
On Christmas morning I awoke, built a fire, put on Bach’s Triple Concerto in A minor, and came downstairs to bear witness to a spectacle that has always grated on my nerves—the ripping of shiny paper, the unearthing of treasures in surfeit, stacking stuff in little caches, stuff that people don’t really need, stuff that somebody bought because they felt they had to…. A sour attitude like this, to no surprise, never gained much favor in my family. About noon, I drove to Watsonville to see Jose Luis.
The Renteria home had two small bedrooms, one for the parents and one for the sisters. Jose Luis slept in a bassinet near the wall heater in the kitchen. If he could have leaned over, he would have seen a scrubbed linoleum floor scarred by 40 years of spills, scuffs, and burns. There was no chimney, no twinkling dead tree in the corner, no stockings on the mantelpiece. There was no pile of shredded red and green paper with images of 19th century Nordic transport, no cherubic Anglo Saxon faces flushed in pursuit of booty. There were no plastic trinkets on the floor. Each sister, however, had a new bow for her braids.
I examined Jose Luis carefully, removing the socks to check his toes, checking his ears, testing his reflexes, inspecting his healing belly button, feeling the spaces between the bones of his head. The little girls squeezed each other’s hand and huddled closely to watch every memorized move, giggling when I checked Jose Luis’ little genitals. I culminated the ritual with the thoughtful nodding of my head while listening to his heart with my warmed stethoscope. I felt like a fraud, a priest without a religion. None of this information would help Jose Luis. At least I told the truth. “Jose Luis is holding his own today, but he seems weaker than he was a week ago. I don’t know how, even with his courage and your love, he can last much longer.”
There was no turkey in the oven, no bustling of candied yams, no spicy onions and celery, no cranberry gelatin quaking on a plate. Mr. Renteria asked if I would like to share their Christmas drink. “It is a family tradition.”
Of course. I was served a full cup of pozole, a thin, corn-based sweetened gruel. I noticed that nobody else had more than a half cup. I drank it very slowly, sitting at a Formica dinette table with the family that would soon lose a son and a brother.
I felt both heavy and dull when I got back into my cluttered Volkswagen (embarrassingly, a “Golf.”) The day, however, had brightened, and the crest of the Buena Vista hill afforded me a sweeping view of the blue Monterey Bay and the crescent of shore all the way from Santa Cruz to Pacific Grove. I hoped that my face would recover from the gasping, contorted, and ultimately unsuccessful struggle to choke off the tears.
Jose Luis died in his mother’s arms before New Years Day, back in the hospital. The stilling of baby breath and the changing of colors just can’t be forced upon three little girls in the kitchen where their food is prepared.
I don’t know if Jesus was anybody other than a generous single man, a victim of one of a never-ending series of ignorant, brutal states. And I don’t know if Jesus, or Jose Luis, left some ripple in the universe, slowly spreading beyond the reach of time and brightening the ink of darkness. I do know that he has forever changed Christmas for me, and he has made it clear that goodness exists beyond science and logic. That I believe and celebrate and will try to live.
(I changed the names.)
Wells Shoemaker MD (Re-typed, 2008)
The Watsonville Community Hospital opened a Level 2 Intensive Care Nursery in August, 1984. This was the first such unit in the Central Coast between San Jose and Santa Barbara, and it certainly represented a triumph of shared vision within this small rural hospital. Things were different then, of course. “No Code,” however, meant the same thing as it does now. I did not expect one of the most meaningful experiences in the new nursery to relate to an accepted death, as opposed to the heroic resuscitations of my enthusiastic talks to the Pink Ladies and the Rotary Club.