Mother's Day difficult for parents of infants in Sacramento NICUs

05/12/2013 12:00 AM

05/20/2013 2:19 PM

Little Carter Silveira was sound asleep in the Sutter Memorial Hospital neonatal intensive care unit.

A ventilator helped him breathe. Sensors on his chest monitored his temperature, and fine tubes snaked into a foot and his left arm and hand. Most alarming, a bundle of gauze covered his abdomen, evidence of the two lifesaving surgeries he has endured, the first only moments after his premature birth on May 4.

Carter was born with his intestines outside his body, a condition called gastroschisis. His prognosis is good, but it's still hard on his mother to spend her first Mother's Day in the NICU, unable even to pick up her baby.

"I want to see my mom on Mother's Day, but I want to spend as much time as I can with the baby here, too," said Annie Bollinger, 32, a recent nursing school graduate who lives in Sacramento. "Just seeing the baby's face when he came out, my life changed instantly."

Hushed and dimly lit, the region's five advanced-level NICUs are an especially poignant Mother's Day setting for first-time mothers such as Bollinger.

Like so many new parents, she and Carter's father, Nick Silveira, hope that their newborn thrives for many decades to come. But NICU parents also pray simply for the miracle that medicine has made routine: the survival of desperately ill babies who struggle against steep odds posed by early delivery, genetic conditions and birth defects.

Teams of neonatal specialists regularly save the lives of babies born much smaller, earlier and sicker than Carter Silveira, who weighed 5 pounds, 2 ounces, and was born when Bollinger was not quite 37 weeks pregnant.

Although a normal pregnancy lasts 39 weeks, the National Center for Health Statistics says that more than 12 percent of live births involve preterm babies – about half a million every year, or one in every nine American births. About 2 percent of these early deliveries occur at less than 32 weeks' gestation.

Causes of premature birth can include carrying multiples, lack of prenatal care and smoking. Experts say that half the time, no risk factor is known.

Today, 90 percent of babies born at 26 weeks survive, as do about half of those born at 24 weeks, Centers for Disease Control and Prevention figures show. So do half of micro-preemies, or babies weighing one pound, 12 ounces, or less at birth.

Only a few decades ago, the situation was dramatically different.

"In 1980, when I graduated from medical school, if a baby was less than two pounds at birth, the chances of survival were minimal," said Dr. Robin Steinhorn, head of the UC Davis Medical Center pediatrics department.

"Now the chances are that the baby will be discharged doing very well, with a healthy life expectancy. What we're able to do in NICU now was just a dream back then. The advances have been extraordinary."

First, she says, doctors realized that premature babies have different health needs than babies carried to term. Preemies' skin is tissue-thin and delicate. Their intestines sometimes aren't able to absorb nutrients. Sometimes, these newborns are simply too young to know how to suckle.

And tiny preemies' lungs typically haven't developed fully, often not producing pulmonary surfactant, the milky protein lining that coats the lungs and makes breathing possible.

The science of survival

The science of the NICU began with the development of an artificial substitute for surfactant – an advance, said Steinhorn, that transformed the field.

Then came the development of a special breathing apparatus, which looks like a miniature scuba mask, to support undeveloped lungs without damaging them, as well as the development of intravenous feeding for babies whose bowels aren't mature enough to absorb nutrients. The increasing use of microsurgery, using microscopic lenses, has led to advances in the repair of newborns' birth defects.

"There's a whole care team now and a science in the NICU," said Steinhorn. "How much oxygen do we give? How much breathing support? We measure every drop of fluid we give. Every drop of medicine is titrated down to the microgram.

"And every year we see more babies surviving with normal life expectancy. They're on the playground doing everything you'd dream of for children."

That's the hope for Jose Jauregui, born on April 28 weighing 1 pound, 8 ounces after his mother, Maria Jauregui, carried him less than 25 weeks. She was hospitalized at UC Davis Medical Center for 18 days before his birth, as doctors worked to prolong her pregnancy and give the baby time to grow.

"When he was born, the doctor said, 'Your baby's alive, and he's kicking and moving around,' " said Jauregui, 38, who lives in Tracy and cleans houses for a living. "But I was so scared, I started to cry.

"The doctors tell me he's doing fine for a premature baby. He's strong."

In the NICU on the fifth floor of the medical center's new hospital tower, Jose squirmed a bit, lying on a cloud of artificial sheepskin and hooked up to intravenous lines. A respiratory mask obscured his face, but NICU nurse Christa Mu said he's breathing on his own.

"I know he seems really small," she said, "but he's doing better than well."

Not all NICU stories have a happy ending: Even if small and sick babies survive, experts know that all don't thrive. That's the dark side of the statistics.

"You can calculate survival at 23 weeks, but intact survival, without major neurological impairment, is smaller," said Dr. Bill Gilbert, medical director of Sutter Women's Services and a high-risk pregnancy specialist.

Long-term complications can include cerebral palsy, chronic lung disease and vision loss.

"It's a long process," said Gilbert. "You can't look too far ahead."

'Just let us have her'

Noemi Guerrero will spend her first Mother's Day at UC Davis' NICU by the bedside of her daughter, Mia Abigail Castellon, born almost a month preterm on May 1 with a rare genetic syndrome.

"We talk to her and pray," Guerrero, 25, said as her husband, 29-year-old Edgar Castellon, translated. "She's our princesa."

The couple live in Stockton, driving up to spend quiet hours with the baby every day after Castellon gets off work as a house painter. In January, doctors told them that Mia might not survive because of anomalies including heart disease and a bone growth disorder.

"It was really scary," said Castellon. "We've talked a lot about it and prayed. You never understand what a blessing it is to have a kid until you have to ask God, 'Just let us have her.' "

The baby needs heart surgery and, doctors have told them, will likely have dwarfism. But swaddled tightly in her NICU isolette, she peers at her parents from underneath a crocheted lavender blanket.

"We want to get her home," Castellon said, beaming and proud, and when he translated for his wife, she nodded. "The whole family wants to see her."

Several decades ago, babies born with gastroschisis – like little Carter Silveira – were unlikely to survive, but today NICU specialists consider the condition fairly easy to treat.

"One doctor told us, 'You guys are pretty boring,' " said Nick Silveira, 26, a carpenter.

"And we were fine with that," said Bollinger.

Their little boy will likely spend a few more weeks in the NICU, healing from his surgeries and growing stronger.

"I didn't think he'd be home for Mother's Day," said Bollinger. "I knew he'd be in the hospital. It's surreal, but I'm really excited.

"We feel a whole new responsibility now. Our world has changed."

WHERE ARE NICUs?

Level III neonatal intensive care units are specialized nurseries caring for the smallest and sickest newborns. In the Sacramento area, these advanced- level NICUs are at UC Davis Medical Center, Sutter Memorial Hospital, Kaiser Permanente Medical Center Roseville, Sutter Roseville Medical Center and Mercy San Juan Medical Center.

Call The Bee's Anita Creamer, (916) 321-1136.

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