Published Jan. 26, 2009
TEAGAN'S STORY: February 2008
'But will she catch up?'
By FELICE J. FREYER
Providence Journal medical writer
Second of three parts.
Teagan Grant, at eight months old in February 2008, is surrounded by noise: The piercing screech of her ventilator, momentarily disconnected. The grinding of the suction machine every few minutes when her mother or nurse clears fluids from the tube in her neck. The five-note tune that warns whenever the oxygen levels in her blood drop. Even when nothing is amiss, the ventilator emits a continuous whoosh.
But amid all that racket, baby Teagan herself makes no sound. When she cries -- as she does during a doctor's examination on this February day -- her eyes scrunch closed, her chubby face reddens and her mouth opens wide. But no sound comes out.
That's because no air passes through her vocal cords. Teagan has a tracheostomy, a hole made surgically in her neck for the tube that runs from the ventilator to assist her breathing.
Teagan was born prematurely, at 24 weeks' gestation. About half the babies that age survive, and Teagan teetered for months before landing in the half who live. She spent seven months in intensive care, an unusually long stay, and on Jan. 13, 2008, she came home -- where she has been sustained by machinery, home nurses, medications and the tireless attentions of her mother, Kimberly.
The doctor, Robert T. Burke, is making a visit to the Grants' Pawtucket home, to assess Teagan's development. He brings Dr. Thuy-Mai Luu, a fellow with the pediatric follow-up clinic at Women & Infants Hospital, where Teagan was born. Teagan is propped up on the couch in a pink pantsuit. Burke drops to his knees and greets her, stroking her cheek and the top of her still-bald head.
"She's getting big, Dr. Burke,” Kim exclaims. Kim's face is puffy with fatigue.
Teagan has been home for only 3½ weeks, but this is hardly her first medical visit. She's already been out and about, her double stroller loaded with medical equipment, to visit her lung specialist, her surgeon, her eye doctor and others. The baby's calendar is packed with appointments, inside and outside the home. Kim juggles the schedules of nurses and therapists, adjusting to the presence of these outsiders, each with her own personality, her own way of doing things.
Just this morning, before Burke arrived, Teagan got a workout at home from a physical therapist, who put a rattle in her hand and encouraged her to bang it, and cheered when Teagan consented to have a teether put to her lips.
WHEN TEAGAN was born weighing less than a pound, her skin was fragile and translucent, her lungs unable to draw oxygen from the air, her heart and brain immature. The medical interventions that saved her also, inevitably, injured her. The ventilator she needed to breathe scarred her lungs. The early months spent in a noisy intensive care unit deprived her of normal baby experiences.
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Kim Grant and home nurse Kathryn Sternfels review the baby's medications.
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So Teagan needs to recover from prematurity but also from the treatments for prematurity. She has a tube going into her neck to deliver air, pressure and extra oxygen; a tube into her stomach, delivering liquid nutrition; and a wire leading to a Velcro strip around her foot, with a red light that measures the oxygen levels in her blood.
Only occasionally does Teagan have a nurse at home overnight. The rest of the time, Kim sleeps on a twin bed in the baby's room. Or rather, she spends the night there. Every few minutes, when Teagan coughs or moves a certain way, one of her machines will register a drop in air pressure or heart rate, and sound an alarm. Even when all the machinery is quiet, Kim lies there waiting for the next mechanical beep or screech.
The scariest moments are when Teagan turns blue. That happened three times in her first two weeks home. On one occasion Kim and her husband, Joe, brought Teagan up to her crib, plugged everything in perfectly, and watched in horror as a blue tint overtook the baby's skin and her monitor showed plummeting blood oxygen. Panic: What was wrong? What was wrong? Then they saw -- they'd forgotten to turn on the air line. So much to remember -- and they were so tired. Another time she turned blue because an air line got yanked out amid that impossible tangle of tubes and wires.
But these are not mistakes one repeats often, and such incidents are already fading into the past by the time Dr. Burke comes to visit on this Thursday in February a few weeks after Teagan Grant came home.
KIM UNDRESSES the baby and Burke takes measurements. He weighs her on the small infant scale that he brought. He lays her on a large sliding ruler, reminiscent of the shoestore devices used to measure feet, and measures her length. She is 13 pounds 10 ounces and 21.8 inches.
He places her on the changing table and listens to her heart with a stethoscope from which a toy cow's head dangles. Burke manipulates her legs, trying to push her knees toward her chest, but Teagan stiffens. "Teagan, loosen up for Dr. Burke. Loosen up, OK?” her mother cajoles.
"This tightness in her ankle,” Burke remarks, "is not normal.”
After Burke has completed his exam, Kim asks him, "How does she seem, like, neurologically?”
Burke answers matter-of-factly. "She's taken a significant neurological hit. … But what that means long-term is difficult to say. She'll develop but what her developmental slope will be, I don't know. I wouldn't imagine it will be like other children. She's going to have problems.”
"Does she seem to be doing all the things a baby does?” Kim asks.
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Kim Grant hugs Teagan after giving her a bath in their Pawtucket, R.I., living room.
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Burke explains that Teagan is doing what a baby does, but a baby much younger. If you adjust for her early birth and count her age from when she should have been born, Teagan would be four months old. But she's not behaving like a four-month-old. "She's doing things in the newborn range rather than the four-month range,” he says.
Kim persists: "But there is a chance she could catch up?”
"I mean, she'll develop,” Burke replies. "I don't know 'catch up,' meaning at 5 years old will she function as a 5-year-old? It's certainly in the realm of possibility but not the realm of likely. … Learning problems, cerebral palsy -- those are all real risks.”
Kim's dimples are deepening and her lips are turning down. Still she holds her voice steady for another question: "But there's also a chance she might not, right?”
Burke finally says, "She's doing well, considering. She was born way, way too early.”
The tears breach the edges of her eyes. Kim leans over the changing table and says softly to Teagan, "You were born really early.”
The nurse who's working today, Kathryn Sternfels, rubs Kim's back and tells the doctor, defensively, that Teagan is not always so stiff. "It's important to let you know that when she's around people she knows, she's very different. She's very engaging, she's more relaxed.”
Luu, the fellow, shows Kim some exercises to loosen Teagan's muscles and encourage her to move her arms toward the center of her body. Kim watches, nodding, sniffling.
Burke and Luu pack up to leave. Burke looks in a kindly way at the stricken mother. "Don't pay too much attention to what I said,” he tells her. "Because I can't predict the future.”
"To be honest I kind of learned that.” Kim's voice is breaking now. "I never thought Teagan would be what she is now. If you look at what she was when she was born, you'd never think she would look like this.”
After the doctors leave, Kim acknowledges that she'd heard such dire words before. It's not as if she got some shocking news. Still tearful, she says, "You just kind of wish they would say, 'oh, she's doing fantastic.' It's not a surprise.
"But you know, when I look at her sometimes, I know she's going to do good. I really do. I just know."
ffreyer@projo.com
Previous: A spectacular homecoming for baby Teagan
Next: Nearly a year after coming home, Teagan is making progress.
Multimedia: A look at the people and devices keeping baby Teagan healthy
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