Band of Outsiders
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."
She is in constant motion, always flanked by several of her kids, one hugging her while holding the monster-size green milkshake receptacle with its plastic straw, others toting a baby's diaper bag, a car seat, or Camille's purse. She has two cell phones, a silver one and a hot pink Motorola Razr. Both ring constantly, and whoever is closest is often handed the inactive phone after much fumbling through purses and pockets.
"Camille's on her other phone," the makeshift secretary explains patiently as Camille stage-whispers, "I'll call her back this afternoon!" while balancing a baby and bottle of formula, earrings dangling and bracelets clinking as she somehow materializes enough arm to squeeze a nuzzling child.
"You don't need coffee when you're with Camille," proffers Penny Parr, the sandy-headed assistant director of the Possible Dream Foundation (formerly known as Up with Downs; the Geraldis started the nonprofit in 1987 to fund their work). Penny is right. Camille radiates palpable energy. The kids with Down's aren't the only ones who respond and exceed expectations in her presence. She has the skill of a natural leader to make everyone want to please her, to seek her opinion and advice. Her charity extends not only to her dozens of children but also to her employees, some of them former alcoholics or drug addicts. Many of them credit Camille, and the children, with saving their lives.
"My mother is a very different woman, and people grab onto her," says her eldest daughter, Renae. "But sometimes I think they help her as much as she helps them."
There is nothing soft or pious about Camille Geraldi, not one trace of Hallmark-card sentimentality or political correctness. She assesses you not by the words you use to refer to a child's malady, but by your actions in his or her presence. Camille is loud and blunt and doesn't give a damn about offending people hers is a righteous indignation, buoyed in the knowledge that she has devoted herself to things from which most of us recoil not just the tracheal tubes and deformities and colostomy bags and adult diapers ("I never smell poop; it smells like flowers to me, thank God," she says), but also death itself.
When Camille voices dislike, it is never for the ill, malodorous, or unattractive. She reserves such sentiments for the judgmental, for the people who see her coming down the grocery store aisle orbited by disabled children and suddenly decide they need cleaning goods rather than baking supplies.
If Camille and Michael Geraldi have any inkling of a political agenda, it is to convince those who turn away that they should stay, and look, and smile, and try to understand. "Every time I see a family out with a Down syndrome child, I go over and I ask what his or her name is and I introduce myself," Camille asserts. "Usually by the time I say Camille Geraldi, they already know who I am."
Michael and Camille met for the first time July 4, 1973, in the intensive care unit of Variety Children's Hospital in Miami. At age 30, Michael was a pediatric resident fresh out of medical school. Camille, 24 years old, was head nurse in the ICU. They had heard of each other Camille's patients always asked about their "Auntie" Camille, and gossip circulated among nurses about Michael being both cute and available. (Although for Camille, who weighed 325 pounds at the time, this information barely registered.)
The afternoon they met, four nearly drowned children had been admitted to the ICU, and Michael joined other pediatric residents there to attend to them.
"She knew we were novices," Michael remembers. "And she stood up and took over. She said, 'Sit down and watch, and I'll explain everything to you.'" He and the others submitted meekly as she explained how to speak with the victims' parents. The first 72 hours following an accident were the most critical in determining the extent of brain damage, and the prognosis that afternoon was bleak. All four children eventually died.
That night was Michael's first on call. After 2:00 a.m., as he patrolled the halls of a quiet ICU, he heard singing. He peeked into a room and found Camille, her shift long over, cradling a terminally ill infant. "This baby's going to die tonight," she told him, "and I don't want her to die alone."
So Michael sat with her in Room 238. For the next five hours, they talked as Camille held the baby girl. Both were born in New York, both were Italian-Americans, and both had dedicated their lives to caring for children. Although the baby, who suffered from spina bifida and other complications, died a few days later, she pulled through that night.
For the next two years, Camille and Michael quietly dated. He joined her when she would take the hospital's long-term patients outside for lunch, dragging portable respirators and IVs behind them. She shared with him her plans to one day open a group home for children with Down syndrome and other developmental disabilities.
In 1975 he proposed marriage. She was stunned. "I never wanted to be married; I wanted to do this," she explains, gesturing to the youngsters.
Michael supported Camille's ambitions to adopt disabled children. And he loved her. "I never saw the weight," he says simply. "I just saw her beauty as an individual."
The only clue that the blue house on SW 139th Street near 102nd Avenue is different from the suburban bliss that surrounds it is the number of cars haphazardly parked on the lawn. The front door opens into a large tiled room where a few teenagers with Down syndrome are usually sitting on beanbags, watching television after school. Wheelchairs containing José, 21 years old, who has spina bifida; and Adam, age 13, who has very little brain, often face the window.
On Wednesday, March 8, the family room hums with activity. A bubbly therapist does exercises with José, lifting and stretching his arms. Billy, a Down syndrome teenager who comes to the house for daycare, grins and says hello. "I love you," he adds cheerfully.
Camille is in the kitchen, holding Arainia, who is bundled in pink. In the breakfast nook, the foundation's makeshift office, employees sit at two desks, answering phones. On the south side of the room is a wall-size dry-erase board with a hand-drawn calendar. Its squares are filled with the first names of children, the last names of doctors, and appointment times.
Another hospice baby, Angel, is parked in a stroller over which two employees lean, cooing. Angel, who has a cleft lip, a blood-clotting disorder, an abnormally small pituitary gland, and a severe brain abnormality, is surviving for reasons nobody can quite understand (literally: Because of her blood disorder, doctors can't take blood samples). When it became clear that IV medication was impossible, the baby's mother gave her to the Geraldis for care. Angel, whom Camille calls "my little flower mouth," has unexpectedly thrived, although her prognosis could change at any moment.
But Camille is exhausted and irritable this Wednesday. Arainia, now nearly three months old, is beginning to lose her ability to suckle from a bottle. Every hour, even through the night, Camille tries to feed her, but the baby takes no more than an ounce at a time. She has lost weight in the past week, developed a cough, and most upsetting stopped crying. "Babies who have what she does cry constantly," Camille explains. "It's this very high-pitched neurological cry called a cri-du-chat cry, and it's all they do. I can sleep through that. It's when she stops that I can't sleep anymore."
The whites of Arainia's eyes sometimes show. She is tiny, the size of a newborn, and she squirms in a contorted fashion that differs from the movement of a healthy infant. Her heart's inability to properly transport oxygen causes her skin to occasionally take on a bluish tinge. She can't hold up her head, and will always lack the mental power to do so.
Arainia's sudden decline has brought Camille to an uncomfortable crossroads. She believes when a baby as ill as Arainia can no longer eat, it is inhumane to prolong her life by inserting a feeding tube. And although the infant's parents agree with her, Camille is the primary caretaker and must take a course of action she calls CYA ("cover your ass").
In 2002 President Bush signed into law the Born Alive Infants Protection Act, initially interpreted by healthcare providers to apply to only aborted fetuses who have shown any sign of life, granting them legal rights under federal emergency medical laws and child abuse statutes. Because the specifics were vague and the government issued no directives, the medical community largely accepted the measure as feckless antiabortion rhetoric.
But in April 2005, following Terri Schiavo's highly contested feeding tube removal, U.S. Secretary of Health and Human Services Mike Leavitt declared that his department, "as a matter of law and policy, will investigate all circumstances where individuals and entities are reported to be withholding medical care from an infant born alive." An article in the medical journal Pediatrics this past October sounded the alarm for healthcare providers: The government was "arguably remov[ing] quality-of-life considerations from the decision-making calculus."
Because of the law, a doctor needs to ensure that the baby's decline is due not to lack of nourishment but to the course of her body's numerous afflictions. Camille has made an appointment with a pediatric surgeon Friday to verify that inserting a feeding tube is unnecessary the bottle has kept Arainia nourished and hydrated.
In the meantime Camille has suggested to the baby's biological mother that she visit her child because she will not be able to do so for much longer.
Camille's anxiety over the feeding tube stems from her having gone through this process before. Adam, a child born with severe brain defects who came into Camille's care thirteen years ago, was given a feeding tube at his parents' request. For his whole life Adam has remained as Arainia is today: virtually immobile. Though he has the gross motor skills to breathe, he is otherwise in a vegetative state, tube-fed and diapered. His biological parents are divorced. His mother, says Camille, visits once a year on his birthday. His father never does. Only recently did they sign a DNR order.
In the days before the doctor's appointment, Camille is concerned about the outcome for Arainia. "This is the most inhumane thing in the world," she mutters in a near-constant refrain. "What are you saving? What are you preserving? The parents don't want a feeding tube; they don't want anything done. But legally I have to go there."
"It can't be our decision," echoes Penny. "We need somebody to okay it."
Camille never questions a parent's judgment. She and her staff care for Adam with the same love and attention they give all the children. He is carefully bathed and turned to prevent bedsores or infection. But if Arainia's parents want to avoid the same fate for their daughter, Camille is determined to support them.
When she and Michael give prenatal counseling, they inform the parents of their options but never tell them what to do. Although they consider themselves spiritual people, their mission is not religious. As for abortion, they believe the decision rests with the mother. With everything they have seen, the Geraldis firmly hold that such decisions can be made only by the people whose lives they affect most profoundly.
As newlyweds, Michael and Camille lived together like any young couple. They wanted children, but Camille had only one ovary and what she calls "a little piece of a uterus." During their first two years of marriage, she suffered seven miscarriages, but on February 23, 1977, after a pregnancy fraught with complications, she gave birth to Renae. The doctor told her the infant would be her only child.
So Camille was surprised that fall when she learned she was seven months pregnant. "She bled from September 30 to December 28," Michael remembers. "She spent the whole time in bed." Three days after Christmas, Jaclyn was born via C-section.
In the years that followed, they worked as a husband-and-wife team at Michael's growing practice in Kendall. He drove a Porsche and she a Mercedes. They owned a boat and a house with a swimming pool. But Camille was unsatisfied. With her daughters in school and the family financially stable and with Michael's encouragement she decided to pursue her dream of opening a home for kids with Down syndrome.
"I was six and my sister was seven," Jaclyn remembers, "and our parents asked us what we wanted, a baby sister or a dog? Of course we said the baby sister."
Camille submitted the family's name to every adoption agency she could find. She requested children with profound neurological difficulties. In March 1986 they received a phone call from a placement agency that had a baby with Down syndrome and deafness. Her name was Darlene.
Two more babies with Down's followed in 1987: Champ, referred to the Geraldis by a Mercy Hospital nurse who did not want to see the baby institutionalized by his parents; and Tiffany, adopted from a long-term care provider in New York. Like approximately 40 percent of children with Down syndrome, Tiffany had cardiac problems, and she spent her first week with the Geraldis undergoing surgery.
Camille had found her purpose, and she was determined to help even more children. By 1988 the brood had grown to nine disabled babies, plus Renae and Jaclyn. Camille had primary responsibility of running the household, while Michael worked full-time at his practice. "When we got married, it was right there on the table," says Camille. "I have my job; you have yours. A marriage with a woman who wanted his time wouldn't have worked anyway, because he drops everything for his patients."
Because her twice-weekly housekeeper was not quite enough to handle the growing household, Camille hired Penny, then a nineteen-year-old British au pair. Saucy and smart, Penny had always wanted to work with Down syndrome kids and had been fascinated with America. Except for a two-year hiatus in 1997 ("I burnt out," she chuckles), she has worked for the Geraldis ever since.
In some ways Penny's presence was more important for the biological Geraldi daughters, who were on the brink of adolescence when she arrived. Renae, who didn't have the nursing instinct Jaclyn inherited from her mother, found the rigors of the household especially challenging.
"It was harder for Renae than it was for Jaclyn," Penny says. "Renae wanted to have more of a normal childhood. She was more influenced by her peers, while Jaclyn was happy in jeans from Wal-Mart."
Renae and her sister now work for the foundation, but Camille's oldest daughter, pretty and well coiffed, admits she was not always so inclined. "Maybe when I was a teenager, I wished things were different," she acknowledges. "It was hard sometimes. My mom and I went through some rough rides. I felt like she didn't even know me."
Yet, like her father and sister, she towed behind Camille, buoyed by Penny in the wake. The family just kept growing. The Nineties brought Angelica, Carmelo, Jackson, Meredith, Sonny, Sophie, and many other children to the Geraldis. When Renae was nineteen, Donovan a child with Down syndrome and no esophagus arrived. To this day she can't explain it, but Renae fell in love with the infant and raised him. The experience changed everything for her. "I realized I need these kids," she says.
By 1996 the family had grown to 31 and counting. They shared three adjacent houses in Kendall, but their neighbors were not pleased. The Geraldis were brought before the Miami-Dade County zoning board and told they had ten years to split the family up into houses more than 1000 feet apart.
Additionally the donations they had received through the foundation began to dwindle. Aid had peaked in the aftermath of Hurricane Andrew in 1992, but the family kept growing and resources became tight. The Geraldis decided to seek funding from the Medicaid waiver program, which pays for care in community-based settings instead of institutions. To receive the licenses, their homes had to comply with state rules six disabled residents to each adult, multiple locks on doors, exit signs in hallways and they had to file a mountain of paperwork. Today only one of the original homes in Kendall, now a state-licensed group home, is still owned by the Geraldis. Another, a private home, is a block away, and they rent two state-licensed residences in Homestead.
The highest-functioning children, however, are no longer in Miami. In 1997 the Geraldis bought a 30-acre farm in Hayesville, North Carolina, a town of 297 residents two hours from Atlanta. Costs are lower there, and Camille hoped she could develop a family business a plan for her children's adulthood. "Camille didn't want the kids bagging groceries at Publix," her husband says.
In 2000 she and two employees earned canine-training certifications. Since then, they have taught the children to perform that work for Service Dogs of America, in addition to caring for farm animals and growing food. Michael Geraldi still has his practice in Kendall, and Camille spends a week of every month with him. Like everything in their lives, the arrangement is atypical, but Camille explains it this way: "The first week I'm back in North Carolina I have to catch up with everything and I don't even notice, by the second week I start to miss him, and by the third week I'm crazy to see him again.
"I was just talking to the mother of one of his patients," she adds. "She said, öI've been going to your husband for nineteen years, and for nineteen years, he's talked about you like you're still engaged.'"
On the day of Arainia's appointment, Penny and Camille wait in the emergency room for three hours. Camille saves the baby's dirty diapers for the doctor to see that her body is simply not digesting food anymore regardless of how calories are delivered. Finally they are admitted into a room in back. Camille lays Arainia carefully on an adult-size bed. She has dressed her in a pink velour frock embroidered with little berries, pink socks with scalloped edges, and tiny knit booties. For hospice babies, Camille never reuses clothes, purchasing each child his or her own wardrobe.
Two student nurses enter the room. Camille delivers a quick lecture of the signs that indicate neurological impairment. "You as nurses have to catch this, because many times the doctors will not," she tells them. "Sometimes these babies go home and they don't catch the problem until their one-month examination." Because she is tense and tired, Camille talks even more than she normally does. If she stops, she says, "I'll fall asleep."
When the doctor arrives, Camille explains the situation. She hands him a thick manila envelope full of Arainia's medical records and DNR forms. He looks through the records and examines the baby. She is not dehydrated, he says, so the bottle, for now, is enough. He will not force a feeding tube to prolong the child's life.
"If this is what the parents want," he says, "I agree with you that this is the right decision."
Camille is relieved. "Anybody who disagrees can come to my house and see what they're like at eighteen," she says.
Outside Baptist Hospital, in a late-afternoon parking lot that has become packed as people visit loved ones for the weekend, Camille must call Arainia's biological mother to let her know the outcome of the doctor's consultation. After four hours in the hospital, she looks exhausted. She opens the back door of Penny's silver SUV and places the baby in the car seat.
"Emotionally this really wore me out today," she sighs, looking genuinely sad. "This is pretty tense for me too. I just think it's the humane thing to do." Her face says these are decisions she hates to make.
She gathers herself and dials Arainia's mother. She tells her the doctor supported her decision not to employ a feeding tube.
"He will do absolutely nothing as long as that's what you want."
She leans into the car and adjusts the baby's socks as she listens to the mother's response.
"He said the only thing for me is to make sure that the family would not come back and sue me, and I told him that you were certain about this. He said that it's your decision, and the baby is not in pain. He said her condition is not acute, and she is not dehydrated. She does not feel hunger. She does not feel satisfaction. So are you sure?"
Camille listens, never fully still, nodding.
"Well my suggestion is that you might want to spend time with her before we leave tomorrow night."
"You are my hero. It is not in her best interest to prolong her life. There would be no quality, and there would be no quantity. Come in the morning. Stay all day; I don't care. Tomorrow will probably be the last time you see her. She has already started having seizures."
"I won't be leaving her side."
The following day, Saturday, Arainia's biological mother bade goodbye to her daughter for the last time. That night Camille returned to North Carolina with the baby. Eventually she inserted a nose tube to keep the baby hydrated, but Arainia's system failed to digest the formula. She began to fade quickly.
In a last-minute decision, Camille sent the infant back to Miami. From Monday night to Wednesday morning, Renae the formerly reluctant participant, the one who had once felt alienated by her mother and her family kept vigil with Arainia as Camille had once done with an infant in a hospital room on the Fourth of July many years before.
Three months prior, Renae had picked up Arainia at the hospital. Now she cared for the girl in her final days. Early Wednesday morning, as she lay in bed with the baby, Arainia suddenly cried out. Renae cradled her. "I think she literally wanted me to hold her as she went," she said. On that day in March, at 5:11 a.m., Arainia took her last breath in Renae's arms.