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Finding our way.

The day Amanda was transferred to our Pediatric Intensive Care Unit (PICU), we communicated our anxiety, born of experience, by sidelong glances and terse descriptions of her array of cardiac anomalies. "Like Jeremy's, but worse. No main pulmonary trunk by echocardiogram, and they couldn't find good branch pulmonary arteries. She'll need cardiac catheterization this afternoon to see if they can find anything big enough to accept a shunt." To the pediatric intensivists, the bedside physicians of the ICU, this brought up memories of several infants referred over the last few years. In the more successful cases, surgery and careful intensive care had allowed us to send home children who were still blue, but alive and active. At the other end of the spectrum were a handful of children who had undergone one or more attempts to send enough blood to the lungs to support life, but who died after a few days--or after many long months. Cardiology and surgical groups accepted Amanda into the unit, and we went to work supporting her during the evaluation. She was mechanically ventilated to control her breathing, crucial to fine tune the balance of blood flow between her lungs and her body, and she received medications by constant infusion. We hoped that the specialists involved in her care would eventually be able to send her home. We also hoped that her parents had been able to hold her and to see her awake before transfer, since it would be days before she would be able to do the things a normal baby would do--take a deep breath, cry out loud, or wet a diaper that her parents could change. She wasn't born lucky, with a heart like hers, but she was born down the road from one of the few centers in the country that could give her a chance at living for more than a few days. Although her parents were only twenty years old and without financial means, they were part of a large and close-knit family in a strong faith community. Since Amanda was her parents' first baby, they could devote all of their attention to her. Still, having to face this kind of challenge as hopeful new parents is almost unimaginable. Being swept into a complex and sophisticated medical system in the time needed to save this newborns life could be the best of luck--or maybe not. Amanda sailed through the catheterization without a hitch, and her parents consented to surgical placement of a shunt from a major artery to a tiny pulmonary vessel several days later. After surgery, she remained very blue because the arteries in her lungs were so small that they severely limited the amount of oxygen that her bloodstream could pick up. The medical team taking care of her included surgeons, intensivists, cardiologists, nephrologists, infectious disease specialists, nurse practitioners, clinical nurse specialists, critical care bedside nurses, respiratory therapists, physical and occupational therapists, hospital chaplains, and social workers. Others also contributed to her care, including such stalwarts of the unit as nursing assistants and ward secretaries, who supported family and staff alike. Over the next three months, her family came to know and to talk with all of us and became well versed in the lingo and details of what some call "chronic critical care." They learned which alarms were worrisome and which could be listened to for a few minutes. They came to know the PICU staff on a first-name basis, met new residents as they rotated through, learned where the coffee pot was, and settled into a routine. Certain physicians were more optimistic than others, since we had as a group seen some infants whose pulmonary arteries were able to grow over time, given the chance. But Amanda's pulmonary blood flow did not improve. While she developed a personality and wrapped us all around her little finger, she remained dependent on the ventilator and IV feeding and became steadily bluer. Any exertion caused her to get suddenly worse. Owing to the breathing tube, her parents hadn't heard her cry since the day she was born, even when she made what they called a "cry face. …