By Chuck Strouse
By Scott Fishman
By Terrence McCoy
By Ryan Yousefi
By Ciara LaVelle, Kat Bein, Carolina Del Busto, and Liz Tracy
By Pepe Billete
By Ryan Yousefi
By Kyle Swenson
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.