Born too soon
By: Julia Soplop
Tags: Preemie, Health, Baby, Pregnancy, Birth

A story of preterm birth

Image by Julia Soplop

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.