Born too soon
A story of preterm birth
Crystal Johnson* sits in an arm chair, gazing down at the neatly swaddled bundle in her arms. Nestled deep inside the layers of blanket lies Crystal’s tiny daughter, Ava Gray. It’s feeding time, but Ava isn’t nursing or drinking from a bottle — she can’t do those things yet. Instead, a string-sized tube snakes through her mouth, down her esophagus and into her stomach, delivering an eighth of a cup of the breast milk Crystal pumped earlier. Ava sleeps as the milk flows into her belly.
“I don’t know what color her eyes are yet,” says Crystal, smiling down at the baby.
Like at least 10 percent of babies in the U.S., Ava was born preterm. She arrived more than three months early at 25 weeks, weighing 1 pound 11 ounces, or about the same as a sweet potato. She was also classified as low birth weight, like 8 percent of infants born in this country. Her body stretched just 13 inches.
She has more than doubled in weight since her birth 52 days ago, but her official due date is still six weeks from now. According to her doctors, Ava might be home in five weeks, just in time for Thanksgiving.
The milk flows inaudibly through the feeding tube, and Ava squirms a little now and then — her soft pink arms pressing gently against the blanket. She squawks softly like a bird from time to time, but she hasn’t been able to cry yet. Mostly she sleeps and grows and fights to stay alive.
Crystal looks on knowingly. She’s done this routine before. Ava is her second preterm baby. Black women, like Crystal, are 50 percent more likely than white women to deliver preterm infants. For some known reasons, such as higher rates of diabetes and hypertension, and some less-clear reasons, they’re also about twice as likely as white women to have low birth weight babies.
Ava shares this room in the neonatal intensive care unit, or NICU, with eight other babies. About half the babies here are covered by private insurance; Medicaid pays for the other half. Shades drawn, the large room is dim and crammed with machinery that supports babies in the most basic task of all: living.
Here, parents and nurses speak in hushed voices, not wanting to disturb the other nervous families. Oxygen whirrs into babies’ nostrils, and the smell of new baby mingles with the smell of hospital antiseptic. Alarms sound endlessly, indicating that an infant’s heart rate is too low or that she’s breathing too rapidly. Here, each breath feels like a gift that might not be bestowed again.
It’s hard to see Ava’s face beneath the elephant-trunk-like tubing that runs over the length of her tiny head and attaches to plastic prongs that rest inside her nostrils. Thick blue elastic straps tightened across her tiny cheeks hold the prongs in place. Whirr-hiss-whirr-hiss. The elephant trunk, called a CPAP, delivers air pressure into her lungs — and sometimes extra oxygen if her saturation is low — so they don’t stick together and collapse when she breathes. Undeveloped lungs are one of the great dangers of prematurity and low birth weight.
Crystal snuggles tiny Ava against her chest. Gold lettering scrawled across her white T-shirt reads: “They’re real and they’re fabulous.” She smiles down at Ava, in awe of the beautiful baby in her arms. Thick black ink etches out block letter initials on Crystal’s upper left arm. A tattoo on her left wrist reads “Aiden,” the name of her 3-year-old son, in thin black script. Her right wrist is bare, but it’s reserved for another name: Ava.
“I’m gonna get it done, but I didn’t know if the ink would be bad while I was pumping,” Crystal explains in her quiet but upbeat voice. The lighthearted side she shows the world sometimes belies the sadness she feels as the mother of two babies born too early and too little. Sometimes she gets depressed, worrying about her children.
“It should be normal to want to cry,” she says of moms with sick babies. “There’s something wrong if you don’t feel depressed sometimes.”
She rubs Ava’s delicate cheek with her finger. “Hey, little peanut,” she says softly.
After about an hour, all the milk has made its way into Ava’s stomach, and the nurse returns. It’s quite a process moving Ava from Crystal’s lap back to the plastic bassinet rigged with technology that keeps her alive. The nurse gingerly lifts the baby out of Crystal’s arms. Alarms sound as the elephant trunk gets displaced, and Ava starts breathing irregularly. But in a few seconds, she’s back in her bassinet, and her vital signs are back to normal.
The nurse unwraps Ava’s blanket cocoon, exposing her creamy skin and a surgical scar running across her left shoulder blade. Two weeks ago, Ava had surgery to repair a part of her heart that had not fully formed, a condition common in preterm infants. She spends most of the day lying in a doll-sized diaper under a heat lamp because her body can’t regulate temperature yet. A mess of wires entangles the plastic bassinet.
The nurse sticks a gold heart-shaped foil sensor to Ava’s tummy, which monitors her body temperature. She straps a cuff around Ava’s tiny foot to measure her oxygen saturation levels. She removes the now-empty syringe of milk from the end of the feeding tube and attaches another one. When Ava burps, the expelled milk travels back up the tube into the empty syringe to be measured to ensure Ava is digesting enough milk.
Other wires, connected to Ava’s body by suction cups, measure her heart and respiratory rates. A monitor off the side of the bassinet registers the numbers these wires pick up. When the numbers rise or drop to unsafe levels, alarms sound. The monitor alarms seem to beep constantly; something is always a bit off in one direction or the other.
Red felt letters run across the top of the monitor spelling, “AVAPOO,” the nickname Ava’s primary nurse, Jill, calls her. Jill also cared for Ava’s big brother, Aiden, when he was in the NICU. She’s the one Crystal trusts and the one Crystal asks for help to understand the medical information the doctors give her.
Four photographs line the bottom of the monitor: one of Ava wearing her daddy’s wedding ring around her wrist; one labeled “Ava’s first dress,” showing Ava dwarfed by a pink doll dress; one of Ava with a red bow stuck to her head; and a smiling photo of her big brother, Aiden, the day he met his “sissy.” Aiden was also born at 25 weeks and weighed even less than Ava. He almost didn’t make it home.
When Crystal got pregnant the first time, she was 22 and thought her life wouldn’t change too much. “I didn’t think I’d have to grow up,” she says. After all, her mother would help care for the baby when he arrived. While she was pregnant, she worked two jobs as a certified nursing assistant and planned her wedding to the baby’s father, her long-time boyfriend Eric. Her jobs were stressful and included heavy lifting.
She sought prenatal care, and screening tests during her pregnancy revealed that the baby had an elevated chance of having Down syndrome, adding to Crystal’s stress. She worried and worried. More tests showed that the first had been inaccurate. The baby’s chance of having Down syndrome was actually just one in more than a million.
Then Eric’s grandmother died. Crystal had heard it was bad luck for a pregnant woman to go to a funeral, but she went anyway to pay her respects. She was six months pregnant and had gained only about 1 pound. During the funeral, she started to feel contractions. They were coming on strong, about every two minutes and lasting 30 seconds. They were painful enough to bring tears to her eyes. She couldn’t walk. But she assumed they were false labor, or Braxton-Hicks contractions. Then she started to bleed.
Eric rushed her to her ob-gyn’s office near their home. She was in labor. She was placed on magnesium sulfate to slow the labor and given glucocorticoid steriodsto speed up the development of the baby’s lungs. An ambulance rushed her 45 minutes from the office to the nearest academic medical center, which offers more advanced care for preterm babies than their local hospital.
The next day, Crystal was fully dilated, and, like it or not, the baby was on his way. There would be no time for a baby shower, no time to decorate the nursery. Crystal gave two pushes, and out came Aiden Joseph, weighing a meager 1 pound 7 ounces. He spent three and a half months in the NICU. Crystal couldn’t hold him for a month.
“About every other day, I would get a call at work to come in, that he might not make it,” Eric says, shaking his head at the memory. Aiden was in and out of surgery. His lungs didn’t work properly, and he was diagnosed with chronic lung disease. His heart didn’t function right. He was too young and too small and too sick.
“I had to grow up fast,” Crystal says. She juggled work with the 45-minute drive each way to visit her son every day. She worried about whether he would live, and she gained 80 pounds during his first few months of life. “I blamed myself for going to the funeral,” she says. She also blamed herself for having a stressful job while she was pregnant, for worrying too much about the genetic test results.
After heart surgery — the same surgery Ava would have later — Aiden took a turn for the better and was released from the hospital a few weeks shy of his original due date. Crystal’s elation at having her baby home was tempered when she received a bill from the hospital for his NICU stay. It took her a minute to register exactly what the number was. It couldn’t possibly be right: “A hundred, a thousand, a hundred thousand, a million,” she remembers counting the zeros. The sum was more than $1.2 million. Her heart sank.
According to the bill, she and Eric would have to pay $500 a month forever, which she knew, between her nursing assistant salary and the money he pulled in working at a local auto body shop, they couldn’t afford. Crystal no longer received health insurance through her job because she had gone part-time just before Aiden’s birth. She was on Medicaid.
As it turned out, Aiden also qualified for Medicaid and Supplemental Security Income, known as disability, because of the Johnsons’ low income and because he was born so early and so underweight. Medicaid, which covers half of all births in their state, picked up the tab for Aiden’s care, and he also began receiving disability checks totaling more than $500 a month. Crystal and Eric opened an account for him.
“He even has a little checkbook with his name on it,” Crystal says proudly.
Giving birth to one preterm infant is a risk factor for having another. Crystal and Eric longed for more children, though. When Crystal found out she was pregnant again earlier this year, she felt if she did everything right, she might avoid having another low birth weight preemie. To help her carry the baby to term, her physician prescribed weekly progesterone shots, which Eric administered. Progesterone therapy can help to reduce the risk of preterm birth in pregnant women who have delivered a preterm infant.
Crystal also opted out of screening tests this time; if something were wrong with the baby, there was no sense in worrying about it while she was pregnant, she thought. She avoided heavy lifting at work and steered clear of activities considered by superstition to stimulate early labor, such as vacuuming and ironing.
Then one morning when she was six months along, she woke up not feeling quite like herself. She went to work but came home early to lie down. She started to get cramps and began spotting. She went back to work for her second shift, then home again to sleep. She decided if she woke up with cramps in the morning, she would go the doctor. The next day brought more of the same, so she and Eric headed straight to the medical center.
“I ain’t stayin’ overnight,” she told an admitting nurse, still determined to carry the baby full term. She didn’t feel like she did when she was in labor with Aiden. But the ob-gyn told her to put on a hospital gown.
“You’re in for the long haul,” she told Crystal.
The doctor put Crystal on bed rest until the baby arrived. Again, she was placed on magnesium sulfate to slow labor and given steroid injections to quicken the baby’s lung development. After three days, she was still holding out. She sent Eric home to get some sleep before he had to work the next morning. But in the night the pain began again.
“I hurt. I hurt!” she told the nurse, but the nurse couldn’t see any contractions on the monitor Crystal was hooked up to. By 3:15 a.m., Crystal was fully dilated, though her water hadn’t broken. An ultrasound revealed that the baby was breach; it would be too dangerous to deliver her naturally, so Crystal’s physician called for an emergency cesarean section.
“No,” Crystal said. “No!” She wasn’t expecting to deliver so soon. “Please call my husband,” she wailed to the nurse. I’m supposed to be pregnant right now, not giving birth, she thought.
Eric had Aiden with him, so they couldn’t enter the operating room. But Crystal’s grandmother made it to the hospital after Crystal had gotten an epidural, and she stayed with her until Ava arrived and was whisked away by the NICU team.
Crystal spent nine days in the hospital. The day after she delivered Ava, her supervisor at the retirement community where she works called to say she was giving most of Crystal’s 40 hours of work each week to another nursing assistant. Crystal and Eric needed Crystal’s full-time income.
“But that’s the last thing on my mind,” Crystal said. “Ava’s my first priority.”
The nurse turns off the lights, and she and Crystal bend down close to Ava, who opens her eyes and looks around the dim room for a few seconds at a time. Ava is 53 days old.
“I ain’t never seen her open her eyes so much! What do you see? A big blob?” Crystal says, laughing. “Is this a growth milestone?” she asks no one in particular.
“You two make cute babies,” nurse Jill says to Crystal and Eric as she checks on Ava. “You just gotta stop making them so small,” she jokes.
“We’re not making any more,” Crystal laughs. “If I have to go through this again, you might as well get me a room in the psych ward.” An only child, she used to want five kids. But the possibility of another preterm baby is too much.
“The next time I could be overdue, or I might not make it to 25 weeks,” she says. “I’d rather not even try. I have a boy and a girl. I’ll just wait on grandchildren.”
Crystal cares for other people all day. Although she lost her full-time hours after Ava’s birth, she continues to work about 15 sporadic hours a week at the retirement community. She works a few hours most weekday mornings, while her mother cares for Aiden. Some days, she also works 4:30 p.m. to 7:30 p.m. Between shifts, she drives 45 minutes to the hospital to spend an hour or two with Ava, then drives back to her home to change back into her work clothes, then another 20 minutes to get to the other side of the county for her second shift. After work, she comes home to Eric and Aiden.
On weekends, she spends as much time as she can at the hospital with Ava. She’s already lost her health insurance again since she just works part-time now. She’s thought about looking for a steadier nursing assistant job with better benefits but doesn’t want to have to take leave from a new job to care for Ava when she comes home.
“Every minute of my day I’m supposed to be somewhere. Every day,” she says.
Before bed each night, Crystal calls the NICU to check on Ava’s status, but she’s frustrated that the nurses don’t give her time to ask questions, to get the details she wants to know about her daughter before she goes to sleep.
Crystal is supposed to be pumping breast milk every three hours for Ava, but with the milk piling up in the refrigerator — Ava started out needing just a teaspoon every few hours and is now up to an eighth of a cup — she recently stopped.
“I’m too tired,” she says. “It’s too hectic.”
At 63 days old, Ava is up to 4 pounds 7 ounces. Because she’s finally maintaining her own body heat, she’s graduated from lying around naked under a heater to wearing clothes: a pink onesy with a tiny rosebud on the chest. The heater has been turned off. This week, Ava also opened her eyes long enough for Crystal to see their color.
“They’re gray, which is what Aiden’s were,” Crystal says happily. “You want to open your eyes again?” she asks Ava.
But like every other week in the NICU, Ava’s progress fluctuates. A few days ago, her doctors took her off the CPAP and placed her on a cannula, which delivers air into her nose to ensure she receives enough oxygen but no longer forces the airway open. Taking her off the CPAP is a necessary step towards learning to bottle feed — and bottle feeding will bring her another step closer to going home. Ava spent almost four days off the CPAP, and her doctors told Crystal she might be home in two weeks.
“I thought she was doing good,” Crystal says. “Then I come back the next day, and she’s back on the CPAP.”
Ava’s oxygen saturation was dipping dangerously low while she was off the CPAP. Her doctors worried something could be wrong with her upper airway — something in addition to the chronic lung disease that goes along with prematurity.
A nurse comes by Ava’s bassinet to ready her feeding tube. One of Ava’s doctors approaches Crystal to talk about a procedure, known as a bronchoscopy, or “bronch,” the doctors plan to perform on Ava to determine the cause of her airway problem. They’ll give Ava medicine to calm her movement, then insert a breathing tube down her throat, the doctor explains. They’ll snake a tiny camera through the breathing tube to look closer at her airway, then pull out both the scope and the breathing tube together. Then they’ll put Ava back on the CPAP.
“What do you think it is?” Crystal asks the doctor, who explains four possibilities. There could be something wrong with her vocal chords. The airway could be scarred from ventilators or the CPAP. It could be a cyst. Or it could be a “floppy” airway, which is common in preterm babies and occurs when the airway isn’t wide enough or stiff enough to hold its shape during breathing. The sides of the trachea stick together, preventing oxygen from getting through to the lungs. Preterm babies typically grow out of the condition without a need for intervention.
“Would any of them require a surgical procedure?” Crystal asks.
It depends, the doctor says. Crystal plays with her hands and keeps her eyes on Ava.
“So when can we go home?” she asks, half-joking. Everyone laughs. No one answers. The doctor leaves, and Crystal is silent, her eyes still trained on Ava lying in her bassinet.
“Try not to worry,” the nurse says. “Most of the time it’s just a floppy airway.”
Later, Crystal says: “If they thought it was major, they would have done something already. If they ain’t gonna worry, I ain’t.”
Crystal arrives at the hospital shortly after Ava’s bronch procedure. The bronch went fine, and Ava is doing well, a nurse tells her. Crystal walks away to wash her hands at the sink in the middle of the room before holding the baby. When she turns around, Ava’s monitor shows her vital stats plummeting. Alarms sound. In moments, Ava’s heart rate falls from around 150 beats per minutedown to 20. Her oxygen saturation slides from nearly 100 percent to 19 percent. Her respiratory rate registers zero; she isn’t breathing. A nurse runs over and hits an emergency call button near Ava’s bed. She tears off Ava’s onsey as the code team descends.
“Get Mom out of here!” Crystal remembers one of the doctors yelling.
“I was crying. I didn’t know what to think.”
A nursing assistant escorts Crystal to the family waiting room. About 15 minutes later, Crystal returns to the NICU to see what’s going on. Ava is breathing again. Crystal asks a doctor what happened but doesn’t glean much from his explanation. She waits until Ava’s stats are back to normal before she leaves the hospital, shaken.
Later that day, across the room from Ava’s bed, a baby dies.
The bronch procedure reveals a narrowing of Ava’s airway, as suspected. The doctors decide to perform another bronch on Ava two days later to get a better look at the problem. Crystal arrives at the hospital a few hours after the second bronch. An IV from the procedure is still stuck in Ava’s foot, and she’s lost 3 ounces since yesterday. She’s back down to 4 pounds 7 ounces.
“I want this to be done quick,” Crystal says, motioning around the NICU. She’s ready to take Ava home. “It’ll be November this coming week. I don’t want to get my hopes up. But if it’s going to be before Thanksgiving, you better pack up!” she says to Ava, tickling her tummy. “That would be a good holiday gift, ’cause I won’t enjoy the holidays coming in here.”
Within a few minutes of Crystal’s arrival, four doctors have congregated around Ava’s bassinet for rounds. She’s being treated for acid reflux, and the surgery a few weeks back successfully repaired her heart. In addition to her narrowed airway, they’re also concerned that her vocal chords aren’t moving well; sometimes complications from the type heart surgery Ava had can paralyze the vocal cords. They page the specialist who led the bronch to come up and explain to Crystal what’s going on in more detail. Crystal listens to the doctors. She doesn’t ask any questions.
After the doctors move on to the next patient, Crystal asks the nurse who’s situating Ava, “Is that why she doesn’t cry?”
“It could be,” the nurse answers.
“I hope she doesn’t need surgery — then we’d have to do this all over again,” Crystal says, again motioning around the NICU. “You’re not cooperating,” she says lightly to Ava.
Crystal’s husband Eric hasn’t seen Ava in two weeks. He works full-time during the week, and lately, Crystal’s mother, who usually takes Aiden on the weekends while Crystal and Eric visit Ava, has been working extra shifts for money to buy the kids Christmas gifts.
“You gotta come home to see Santa!” Crystal says to Ava.
After waiting for a few hours, Crystal has to go back to work before the specialist comes around to speak to her about the bronch results. A resident takes down her phone number to pass along to the specialist.
Two days later, Crystal sounds panicked and frustrated. She’s sick with a cold, so she can’t visit Ava. The virus that can cause an adult cold, respiratory syncytial virus, or RSV, can be deadly to a preterm baby with chronic lung disease, like Ava. The doctor still hasn’t called with the results of Ava’s bronch, and Crystal worries.
The doctor calls the next day.
“He told me so much, but didn’t explain it,” she says. “He tried to sugar coat it, like it’s not so bad.”
But what he says isn’t good. In addition to concerns over her floppy airway, he’s worried that scar tissue left behind from a ventilator Ava was on just after birth and during her heart surgery may be blocking her airway. He says they need to have a family meeting to discuss the next step, but he may have to perform a tracheostomy, which means cutting an opening through Ava’ throat into her windpipe to create an airway. Ava would then have to live with the “trach” for two years, give or take.
Crystal prays and prays. She thinks about how people would look at Ava funny if she had a hole in her neck with a tube sticking out. She wonders if she could cover it up with clothing, like a scarf, then realizes a scarf would close off the airway.
“My mind’s been out of this world worrying,” Crystal says.
Then a few days later, as Crystal is walking down the hall toward Ava’s room, a respiratory therapist comes running out to meet her.
“We’ve got a surprise for you!” she says. She’s jumpy and excited. Ava is off her CPAP again. She isn’t even wearing a cannula for extra oxygen. She’s breathing normally, and her vitals are good.
Crystal is in disbelief. “I never prayed so hard,” she tells Jill, as she hands her a box of donuts — her usual thank-you gift to the nurse. Jill and the respiratory therapist had urged the doctors to give Ava another chance to breathe on her own before doing anything drastic. After all, she’s two weeks older than she was the last time they tried it.
Crystal sits down, and the nurse places Ava in her arms. “It’s a fairytale,” Crystal says with a sigh. “I was ready to give up.”
Over the next hour, nurses and doctors walk by — all showing disbelief that Ava is off her CPAP. One doctor smiles and gives the OK signal with his hand to the nurse. Today, no one mentions the possibility of a trach. If Ava continues to breathe well on her own, like she has for the last hour, she won’t need one. She’s also growing well — nearly 5 pounds. But it’s touch and go from here.
Crystal was supposed to pick up Aiden at his grandmother’s house an hour ago, but she can’t tear herself away from this event. “I just can’t leave because this is a first moment type thing,” she says, smiling down at Ava. “Now we gotta hear her cry.”
The baby next to Ava is going home. The baby’s portable crib has been packed with supplies, and a nurse gives the mother final instructions. Doctors and nurses file in to say goodbye.
Crystal watches. “I know our big day is coming soon, but I don’t know when,” she says. “My hope of being home for Thanksgiving is out the window.”
Thanksgiving is just one week away. Ava’s doing well; she’s breathing off the CPAP and has grown to 5 pounds 6 ounces. She’s 85 days old. But she has to learn to suck on a bottle and breathe at the same time so her feeding tube can be removed. She drank from a bottle once earlier in the week, but her oxygen levels dropped as she sucked. Another bottle-feeding attempt is scheduled for this afternoon. She’s got to prove herself before she’s discharged.
Today, Ava will also receive her new-baby immunizations.
“Aiden got his when we were getting ready to take him home, so I hope we’re close,” Crystal says.
Release from the hospital doesn’t often mean the end of medical intervention for a low birth weight preterm infant. Ava’s big brother, Aiden, will soon turn 3 years old. The chronic lung disease he was diagnosed with at birth makes him more susceptible to respiratory illnesses. He picks up colds easily, but luckily has never had to be hospitalized.
When Aiden was an infant, Eric asked his doctor whether Aiden’s lungs would be strong enough for him to play sports as a teenager. The doctor couldn’t answer, Eric remembers. Because medical interventions have been able to save babies born at 25 weeks only in the last couple decades, few adults who were born very preterm are around to study.
Aiden weighs in at 28 pounds — smaller than average for a 3-year-old. A few times a year, he visits the medical center’s Special Infant Care Clinic, which follows up on preterm infants as they grow. His motor skills are okay, but he was late developing speech. So he works with a speech therapist twice a week and a play therapist once a week to help him learn to describe his toys and activities. The therapy does help.
“He’s talking pretty good now,” Eric says. The Johnsons have been told by Aiden’s physicians that by the time he reaches school age, he’ll probably have caught up physically and developmentally.
But research shows that preterm birth and low birth weight are associated with a host of residual neurological and developmental issues, including mental retardation, attention deficit hyperactivity disorder, blindness, deafness and hypertension. Only time will tell if Aiden has any continuing developmental problems.
On Thanksgiving, Crystal, Eric and Aiden celebrate at Crystal’s grandmother’s house. Then they’re off to her aunt and uncle’s to spend time with the other side of her family. Afterwards, they drive to the hospital. Eric and Aiden wait in the car — children still aren’t allowed in the NICU this time of year,so Aiden won’t get to see his “sissy” today.
Crystal rides the elevator to the fourth floor, walks past the nursery rhyme murals dotting the walls of the NICU — giraffes and elephants, chickens and balloons — carrying a plate piled with food she’s put together for Jill, who’s working today. How many times has she walked this hall these past three months? She enters Ava’s room, gives the plate to Jill and picks up Ava. She kisses her baby. She talks to her.
As a surprise, Jill has stamped Ava’s handprint onto a piece of paper, decorated the handprint and taped it on the monitor. “Mommy’s Little Turkey,” the artwork reads. “Happy Thanksgiving!”
Ava is still growing quickly; she weighs more than 6 pounds — a healthy weight for a full-term newborn. She’s taking half her feedings by bottle now and the other half through the feeding tube. But a recent test shows she’s silently aspirating, or choking on some of the milk she swallows without showing any outward signs of distress. She’ll have to tolerate all her feeds by bottle for at least 24 continuous hours before she can be released.
Earlier this week, she stopped breathing again and turned gray, so she’s back on a cannula for extra oxygen. Putting in a trach is still a possibility, but only if she doesn’t grow out of her floppy airway in the next month. Her vocal cords still aren’t functioning well, but she’ll probably grow up to speak — though in a raspy voice.
Crystal puts Ava back in her tiny crib after 20 minutes, walks back through the mural-filled hall, takes the elevator down, and gets into the car with Eric and Aiden. They make their way to Eric’s parents’ house for one last Thanksgiving meal.
“Now they’re saying she won’t be home before Christmas, but we’ll see,” Crystal says. “Miracles do happen.”
All names have been changed to protect privacy.
This piece was first published in Julia Soplop’s master’s thesis in 2008. Statistics have been updated.