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Arainia's parents expected a healthy baby. Her first moments of life seemed to confirm their hopes. On the outside she looked perfect, with downy strawberry-blond hair and blue eyes, ten fingers and ten toes. Perhaps it was the brief illusion of wellness the anticipation of a new life unfurling before them that made the subsequent diagnoses even more devastating. The problems found during Arainia's first three days of life had not been detected previously, despite diligent prenatal care.
The first warning, discovered soon after birth, was cardiac arrhythmia. Her heart pumped ineffectively, failing to deliver blood and oxygen to the brain and other organs. Doctors transferred the infant to another South Florida hospital, which specialized in cardiac care. There an attentive nurse made somber note of certain subtleties: One of Arainia's ears was slightly lower than the other; when she balled her hands into fists, her thumbs were on the inside; she arched her back and cried in a particularly high-pitch way.
None of these symptoms alone determined a diagnosis, but together they raised suspicions of a brain defect. Within 48 hours a routine CAT scan, followed by an MRI, confirmed the worst. In addition to the cardiac problems, the surface of Arainia's brain was smooth instead of wrinkled. The corpus callosum, where communication between the two hemispheres occurs, was malformed and nearly absent. She was blind and possessed the brain capacity only for the most basic bodily functions.
Doctors told her parents (who wished to remain anonymous) that Arainia's life would be brief. Though it might be artificially prolonged, she would be unaware of anything around her. She would not know day from night; she would feel neither hunger nor satisfaction; and she would never be capable of interacting with the world around her. For Arainia's condition, there is no cure.
Ten days after her birth, Arainia's parents signed a Do Not Resuscitate order (DNR) and stopped all cardiac and seizure medication. Then, with the help of a hospital social worker, they sought out someone medically qualified and psychologically able to care for Arainia until she passed away.
They found Camille Geraldi.
In late December, after a brief phone call, the 57-year-old went to Wal-Mart and bought baby clothes, bottles, formula, and diapers for her 59th child.
Anencephaly, autism, cleft face, cortical blindness, Down syndrome, holoprosencephaly, massive cranio-facial deformations, mental retardation, microcephaly, near-drowning, Noonan syndrome, Prader-Willi, shaken baby syndrome, status post meningitis infection, Zellweger syndrome the list goes on and on, a catalogue of rare congenital disorders or horrible accidents, each a condition represented in an individual cared for by Camille and Michael Geraldi.
For twenty years, Camille, a nurse; and Michael, her pediatrician husband, have been known by healthcare providers in South Florida as a last resort for children born with the most severe handicaps and illnesses. They have adopted or been surrogate parents for 41 children and adults and care for an ever-changing number of others. Through a nonprofit, the Possible Dream Foundation, the couple offers job training for disabled adults, counseling for families of disabled children, and respite care for overwhelmed parents. Everything is on a pay-by-donation basis. They also have two (healthy and normal) biological daughters, 29-year-old Renae and 28-year-old Jaclyn.
Hospice care for babies whose lives will be brief has long been a component of their work. Over the years the couple has cared for eighteen imperiled infants and children who have died, many of them exceeding their life expectancies by months and even years.
With a newborn like Arainia, care centers on only one thing: filling each moment of each day with comfort and love. But the couple's role in making end-of-life decisions has placed them in an increasingly difficult position. Federal laws like 2002's Born Alive Infant Protection Act have pressured caretakers to emphasize quantity of life over quality, often with painful implications for families already facing the most difficult decision of their lives.
The Geraldi children's disabilities have made the couple a target for taunting and discrimination. Over the course of two decades, malevolent neighbors have thrown acid on their cars and left hate mail on their doorstep. Sometimes, though, the worst injustices come with the best intentions. For the Geraldis, forcefully prolonging the life of a dying infant against the parents' wishes, whether through tube-feeding or artificial life support, is the most inhumane thing of all.
Camille Geraldi has the concave posture of a person who lived most of her life overweight and then became thin. Her hair is short and spiky, her clothes are multicolor and sparkly, and her ears are pierced multiple times. She speaks in a deadpan New York accent and lugs around an enormous fluorescent green travel mug filled with an icy protein shake, her principal source of nutrition since having gastric bypass surgery two and half years ago.
When explaining her devotion to the task of advocacy and care for the disabled, Camille begins with an account of her weight. "I always lived as a very fat person," she says. "I weighed between 325 and 422 pounds for most of my adult life. I knew what it was like to be stared at and ridiculed. I started volunteering when I was fifteen, and my family practically disowned me. It was all the way an embarrassment for my family that their daughter worked with retarded children." She pauses. "I just wanted to create a really great family."