Reality: 'You just feel so empty'
The evening sky dims as Dave and Diane Anthony walk into West Penn Hospital's neonatal intensive care unit. They take it all in: the hurried nurses, the constant beeping of monitors, the bird-like babies with 2-inch diapers.
They have heard West Penn has one of the best nurseries for premature babies in the country. But they don't know what to expect from what will become their home for the next three months.
The NICU (pronounced NICK-you), as everyone calls it, consists of five rooms with glass sliding doors along a narrow hallway. The unit is sectioned off by security doors and visitors are instructed to scrub their arms up to their elbows with antimicrobial soap and a disposable brush. They must wear long-sleeved hospital gowns before stepping into the rooms.
Each room holds up to six incubators, the artificial wombs that can help a newborn do just about everything but cry.
Some are covered with colorful blankets to shield the sensitive eyes inside. Others are lined with stuffed animals or photos of siblings the babies have yet to meet.
Pittsburgh's five neonatal intensive care units -- at West Penn, Children's Hospital, Allegheny General, Mercy Hospital and Magee-Womens -- almost always are full. At Magee, more than 1,000 babies will pass through the NICU on any given year. At West Penn, it's 500 babies.
Studies show the chance of preemies dying when they are treated in high-level NICUs is reduced by about 38 percent.
In the NICUs, babies receive carefully calibrated, high-end care, sometimes with one nurse responsible for as few as one or two patients, depending on their condition. Monitors measure their every move, and alarms go off when their heart rate goes up or down or if their lungs aren't expelling enough carbon dioxide.
Such specialized care means that, at least in the beginning, the babies will be off-limits to their parents. They won't get to hold them, feed them or change their diapers. A nurse will bathe them and rock them.
“You just feel so empty,” Diane says.
It doesn't take long for West Penn's neonatal doctors, led by Dr. Nilima Karamchandani, to discover the Anthony twins are riddled with the most common complications found among preemies.
“You can take a neonatal textbook and between the two of them they're pretty much going through every diagnosis,” said the soft-spoken Karamchandani, who has worked in neonatology longer than anyone in Pittsburgh. “Most babies don't have all these complications.”
A sonogram reveals blood is seeping into Katelyn's brain. It is filling up a very fragile area called the germinomatrix where brain cells are produced.
Doctors liken it to a stroke in an adult. They suspect the problem, known as intraventricular hemorrhage, happens because blood vessels in a baby's brain are fragile and easy to break. The bigger the hemorrhage, the more a baby will be expected to have problems with talking and walking or a permanent brain-injury.
About a fourth of babies born at Katelyn and Jacob's gestational age have this problem, but doctors can do little to stop the bleeding. That means the problem has to fix on its own. Fortunately for Katelyn, the bleeding is concentrated in a small area.
Her brother is another story.
At barely 11 days of age, he begins to have episodes of bradychardia -- when the heart beats at slower than normal. He also has apnea spells, when he suddenly stops breathing. He is pale and tired.
Jacob also has been hit with one of the most common surgical emergencies in newborns -- necrotizing enterocolitis. His intestines are inflamed. The likely culprit: the teaspoonfuls of milk he ate through a feeding tube.
It is likely that his immature intestines, not expected to digest food for another 14 weeks, couldn't handle the milk. The added stress allowed bacteria normally found in the gut to invade the intestinal tissues. The germs can destroy a baby's digestive track and cause the intestines to swell so much they drill a hole right through them. The condition kills one in four of babies who develop it.
To avoid the infection, severely premature babies aren't fed for the first few days of their life. Instead, they get their nutrition through a plastic tube inserted into blood vessels in their bellies -- mostly a combination of protein, sugar and fat.
For Jacob, who had been eating a teaspoon of breast milk a day, necrotizing enterocolitis means his feedings will stop.
And for his parents, it means another scare, another chance one of the twins might not survive.
Diane walks into the NICU on a chilly morning and Jacob isn't moving. His skin is pale. Diane's stomach knots.
“Oh my God, is he dead?” she thinks to herself, peering into the incubator.
She stares at him, overcome with emotion.
“Mommy's here,” she whispers.
Jacob's belly had ballooned to the size of a tangerine. Laboratory tests showed his trachea and his blood were positive for Klebsiella, a nasty bacteria that can destroy the lungs. His intestines were swollen, filled with gas and unable to process food.
Doctors once again put a breathing tube down his windpipe. They start him on a 10-day course of intravenous antibiotics. Diane is distraught because she can't tell if her baby is in pain. He looks bad, she tells herself.
“Mommy would like to hear you cry,” she says to him.