Learning the basics By FELICE J. FREYER Providence Journal medical writer
Last of three parts.
Meggan O'Connell leans forward and strokes the round cheeks of Teagan Grant, who is 18 months old on this December day, and who sits in a double stroller, her ventilator droning from the seat behind her.
The stroking is a warm-up for Teagan, to give the little girl pleasant feelings around her mouth -- something still new for a child who spent her first months with a tube down her throat.
Audio: Speech therapist Meggan O’Connell on teaching Teagan how to eat.
O'Connell is a speech therapist at Hasbro Children's Hospital, and she works on both feeding and speaking. In O'Connell's office today, Teagan is getting a lesson in how to eat.
Most babies don't need such instruction. Most babies simply get hungry, cry and suck. But Teagan has done none of those things.
Born at 24 weeks' gestation, Teagan had immature lungs that couldn't take in enough oxygen. At birth, a ventilator tube was thrust through her mouth into her lungs. Months later a surgeon cut a hole in her neck for the ventilator tube and another one in her stomach for feeding. Smaller and sicker than most preemies, Teagan spent seven months in Women & Infants Hospital before she came home, in January 2008, to a house stacked with medical equipment.
O'Connell puts a piece of pineapple in "a safe feeder," a little nylon mesh bag with a plastic handle, and gives it to Teagan, who immediately puts it in her mouth, grimacing but chewing eagerly.
Teagan's mother, Kimberly Grant, watches her and declares, "Teagan, I am so proud of you."
The safe feeder, O'Connell explains, prevents the baby from taking a bite she might choke on, while allowing her to chew and taste. Teagan's astonishment at the pineapple's tang shows on her face.
Teagan Grant, 18 months old, cries as nurse Walter Ortiz works on her tracheostomy cuff during a visit to a speech therapist.
Teagan's face is often expressive. From an early age, she's been responsive to others, aware of people and able to distinguish strangers from family. She smiles often. The many nurses and therapists who care for Teagan often praise her spunky personality. Teagan now knows the concept of "no" -- which she freely expresses by swatting any hand offering unwelcome help.
O'Connell puts her finger under Teagan's chin, pressing up on her jaw. Teagan has a tendency to open her mouth too wide. She has to learn the mechanics of eating, too -- closing her lips and pulling her tongue back.
Next O'Connell puts a temporary "speaking valve" inside the tube that runs into Teagan's neck. The valve forces air through her vocal cords. Usually consigned to silence, Teagan now lets out a little cry. "Did you hear that?" Kim exclaims. Teagan will use the temporary valve from time to time to practice making sounds, and eventually may keep it in whenever she's awake.
After the appointment with O'Connell, Kim, Teagan and her nurses head to the Grants' Pawtucket home.
Teagan has an appointment with Debra Minogue, nurse coordinator with the Early Intervention Program at Hasbro, one of 11 programs in the state that provide services to children who have developmental delays. Some 3,400 Rhode Island children under age 3 are enrolled. For Teagan, Early Intervention provides in-home speech, occupational and physical therapy, and nutritional advice. Minogue stops by about twice a month to make sure Teagan is getting what she needs.
Kim Grant's appointment book shows Teagan's busy schedule.
Two appointments in one day -- this is typical. "It's very rare that Teagan gets to spend a whole day at home and not do anything," Kim says.
Teagan is an extreme example of the burdens that premature births can place on families. Most preemies don't need ventilators and feeding tubes by the time they go home, but all face high costs and the risk of disability.
By now, Kim is taking it in stride. What was once overwhelming has become routine. She deftly handles Teagan's ventilator, feeding tube and monitors. She manages the flow of medical supplies into her house and coordinates the scheduling of home nurses and therapists.
Kim says she never looks back on the terrifying day, last February, when she thought Teagan had died. She was home alone, no nurse nearby. The baby's tracheostomy tube came out of her neck and she stopped breathing, turning limp and blue. Kim manually forced air into her lungs with an ambubag, a hand-operated device for such emergencies, and screamed for help from the 911 operator. Teagan spent the next month at Hasbro Children's Hospital, but she has not returned since -- an achievement for a preemie.
Kim has never been able to add up what it all costs. Incomprehensible bills fly in from so many places. The cost of renting equipment and buying supplies runs to several thousand dollars a month. Home nursing cost close to $90,000 for the first nine months of 2008. And the bills from Teagan's nine doctors -- who knows? So far, most have been paid by the Grants' private health insurance and state Medicaid, which has a program for disabled children.
Kim just hopes most services will continue to be covered, and that they'll find a way to manage everything else, such as their outsized electricity bills. To make ends meet, in the spring Kim returned to her part-time job as a bartender at a banquet facility in Massachusetts.
Kim Grant with Teagan as the family celebrates her first birthday in June.
What do Teagan's parents see in her future?
"We don't know," says her father, Joe, who is 43.
"Don't know at all," says Kim, 39.
"Sometimes I just think about it and I get scared," Kim adds. "Then other times I just try not to think about it. … I'll get worried that she's not sitting yet. But then another time I'll see her working hard at doing it. And then I'll get positive about it. But I know she is a smart little girl. And I know she's going to do well. I think she's going to be really smart and really quirky."
Although Teagan did not suffer a brain bleed -- a devastating complication for many preemies -- there was damage to the white matter on the left side of her brain. Such damage is often associated with cerebral palsy. Also, roughly 5 percent to 20 percent of babies born at 24 weeks develop cerebral palsy. Teagan is weak on her right side. But it's not yet clear whether she simply needs more time to develop or whether she will always have movement limitations.
"Time will tell," says her primary-care doctor, Gregory A. Fox. He has seen children like Teagan grow up to be normal, while others with less obvious problems have ended up severely disabled.
"I would say she's unlikely to be a competitive gymnast," he says, "but I do think she has a chance of doing pretty well."
Audio: “She’s got a very strong personality.” – Physical therapist Melissa Medeiros
What does Teagan have going for her? Fox has an immediate answer: "She's got the faith of her mother. And just her good spirits.… She's a happy baby. She's got a lot of people that care."
On a recent afternoon, Kim is at home with her father, Tom Dwyer, and one of Teagan's devoted nurses, Kim Taylor. It's a cold, sunny day and Kim Grant is chatty and cheerful as the snow reflects bright light into the living room of the little white Cape.
Teagan is strapped into her stander, a newly acquired piece of equipment that holds her upright for 45 minutes at a time, to strengthen her muscles. Ankle-high braces keep her feet pointing forward. She's facing her grandfather on the couch, shaking some plastic keys. He holds her other hand and softly talks to her the way grandpas do.
It's quiet: the ventilator is off, and Teagan is getting by on oxygen only, which flows silently through a slender tube into her neck. Kim has begun the slow process of weaning Teagan from the ventilator, by turning it off a few hours a day.
Teagan enjoys her stander but now she's starting to tire, and her head lists to the side. Dwyer gently pushes it back up.
Back when Teagan was being discharged, what had Kim envisioned for her daughter today, a year later? What did she expect?
She doesn't answer the question. Her father prompts her: "Standing in the driveway."
The nurse comes in from the kitchen and asks Kim why she's crying.
Kim describes what she'd imagined a year ago as she prepared to bring the baby home: her daughter, her Teagan, standing at the end of the driveway, in a little dress, twirling round and round.
TEAGAN'S STORY: January 2008 Coming home is just the first step
Teagan Grant, born at 24 weeks, comes home after seven months in the hospital – to a house full of medical equipment. Read the story
TEAGAN'S STORY: February 2008 'But will she catch up?'
The Grants master their baby’s care, but Kim asks some tough questions about the future. Read the story
GRAPHIC Every day matters
Track the week-to-week development of the heart, lungs, brain and digestive system in the womb, the impact of premature birth on these organs, and on a preemie's survival Explore the graphic
RELATED STORY High costs follow rise
in preterm births
Throughout the country, more than 530,000 preemies are born each year, including about 1,500 in Rhode Island. A lot of preterm infants die, but if they survive, they need days to months of intensive care, at costs that can run into hundreds of thousands of dollars or more — expenses that contribute to the price of health insurance for everyone. Read the story
CHART
On the rise in RI Preterm births in Rhode Island have steadily increased since 1990, but the growth has been chiefly among late preterm births
