The day he was born 15 weeks early at Jackson Memorial Hospital, Samuel Augustine arrived as a one-pound bundle of uncertainty.
He couldn’t breathe, eat or cry.
Diagnosed with microcephaly, Samuel was placed on a respirator to push oxygen into his undeveloped lungs, and had a feeding tube attached. He had seizures. His vocal cords were paralyzed. His heart was misbehaving.
For 11 months, Samuel remained at Jackson before being moved to a pediatric intensive care unit in Pompano Beach.
There, nurses tended to the baby and began coaching his parents, Antoinise and Dieuquifait, on just how complicated their only child’s life would become. Samuel would need constant care and heavy medication: atropine for his eyes, Revatio for his lungs, Keppra and Topamax for his epilepsy. His tracheotomy would need daily tending. His vitals needed to be checked regularly. His long-term prognosis was all wait-and-see.
But after a month, Antoinise had had enough.
Nurses were treating Samuel like a patient, not a baby, she said. Their catalog of won’ts — won’t roll over, won’t sit up, won’t crawl — seemed to be snuffing out all of Samuel’s potential and setting him up for a life of won’t walk or talk, won’t play peekaboo or catch, won’t go to school, won’t have friends, won’t fall in love. So soft-spoken Antoinise, whose Creole is better than her English, began lobbying for Samuel’s release. It took some fighting, but in June, she convinced the medical staff to finally let her take her baby home nearly a year after he was born.
So home they came: Samuel, his respirator and tanks of oxygen, his IV stand, G-tube, a 24-hour nurse, enough medicine to fill a nightstand, and discharge papers that labeled him “medically fragile.”
“You feel like no one can take better care of your child than you,” Antoinise said.
Seven months later, Samuel is a chubby 28-pound boy on the verge of toddler-hood. He’s being weaned off his respirator, and every day when he wakes up, Antoinise bathes him, dresses him and helps his nurse, Sonya Joseph, clean his tracheal tube and G-tube. She calls him BooBoo to coax his eyes open, uses playtime for physical therapy and sings “Bingo Was His Name-O.’’
Sammy sometimes smiles at the sound of his mother’s voice.
When the Advocacy Network on Disabilities contacted the Miami Herald to nominate the Augustines for the annual Wish Book, counselors said the family had one request: a new wheelchair to replace the infant chair Samuel had outgrown. A story, they hoped, might raise enough money to buy a bigger chair.
“They’re kind of in the thousands,” the family’s counselor, Stephanie Lumas, said during a visit with Samuel and Antoinise.
But a quick scan of the Augustines’ one-room studio suggests a wheelchair is just the beginning of their needs. The family’s fifth-floor unit sits around the corner from an elevator that sometimes breaks. Roughly 20 percent of the families that live in the Center Court Apartments earn less than $24,000 a year. Samuel’s dad earns $10 an hour as a dishwasher, but wants to go back to school to train as a nurse.
The bright room is spick-and-span clean but tiny. A curtain covers an alcove holding Antoinise and Dieuquifait’s bed. The rest of the room is Samuel’s. A pediatric crib, a nightstand, and a reclining chair for his nurse take up much of the space. The family eats at a folding table. There are no rugs on the white-tiled floor or pictures on the white walls. After burglars broke the door lock, Lumas said it took building maintenance a month to fix it.
Getting Samuel downstairs and outside is difficult. Once they arrive at the lobby, they need to cross a barren parking lot cratered with potholes to reach the entrance to the complex. They don’t own a car, so Antoinise and Samuel rarely go out, unless an ambulance is sent to ferry them to a doctor’s appointment.
Lumas became the family’s counselor in July as they began trying to navigate the world with a disabled child. The Advocacy Network provides services for both children and adults, attending visits with doctors and therapists and tracking down financial assistance. The logistical work also comes with a fair share of emotional shepherding, especially for parents still adjusting to a new diagnosis. That world can be even more dizzying when language is a barrier, Lumas said.
“They have trouble letting people in,” she said, explaining the emotional factors and the work she does to help parents understand that their baby’s condition doesn’t diminish his worth or his rights.
“Your child is not disabled. They just have a disability,” she said.
As they get older, she tries to prepare them for the more daunting task of dealing with public schools not always able or willing to address their needs. For many clients, Lumas said neighborhood schools aren’t equipped to deal with their children, so students are sent to facilities miles from home. The agency helps find the best placement and also offers training to schools.
“It’s very difficult as a teacher to have a child with a disability and not know what to do,” she said.
Ultimately, Lumas and her colleagues want parents to be their own advocates, a daunting task that only gets harder.
“My boss likes to say our main goal is to make it possible for families to put us out of a job,” Lumas said.
This is not the future the Augustines had in mind, Antoinise said. In Port-au-Prince, Antoinise, 35, worked as a nurse, and Dieuquifait, 40, was an agricultural engineer. When Dieuquifait ran afoul of the local political party for refusing to distribute food to favored residents, they came to Miami to wait for things to cool down, Antoinise said. Up to that point, Antoinise’s pregnancy had been uneventful, but when she arrived in Miami, she began bleeding and went to the hospital, she said. Doctors performed an ultrasound and said something was wrong with the baby.
After 13 days in the hospital, Sammy arrived.
When asked about how she sees his future, Antoinise is quiet, wiping tears from her eyes. When she explains in Creole what she wants, Lumas translates a simple list: a chair so he doesn’t have to sit in a wheelchair or lay in his crib all day, a mat for the tiled floor and maybe some toys. When pressed about their tiny studio, she agrees a playroom would be nice, where they could play on the floor together, where it’s safer and easier to take him outside and neighbors don’t stand in the hall smoking and aggravating his breathing, and where they don’t all share the same room.
“She wants him to be just like everybody else’s kids,” Lumas said. “To speak and walk. She just wants to see him thriving.”
Follow Jenny Staletovich on Twitter @jenstaletovich
Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. For information, call 305-376-2906 or email email@example.com. (The most requested items are laptops and tablets for school, furniture, and accessible vans.) Read more at MiamiHerald.com/wishbook.