Instead, I watched in helpless agony as staff at Medical Center of Arlington, just outside Dallas, expertly worked on Preston to force a tube down his narrow throat so he could breathe. I wanted to see my son, but not this way, not two months early. Not as one of the more than 1,200 premature babies born in this country every day, fighting for his very young life.
“Does he look OK? Does he look OK?” I kept mindlessly asking our doctor, not knowing what else to say, anxious about Preston appearing a little blue. Deep down, I couldn’t help wondering whether my 4-lb., 4-oz. son would make it, while pushing such thoughts away from the surface as I observed in a bit of a haze.
“He looks the way he’s supposed to look,” said our delivery doctor, Dr. Steven Seligman, calmly as he obviously had completed many such births.
They got Preston breathing in good time, then he was placed in a clear, enclosed Isolette incubator, where we could only look at him, and soon whisked away to the Neonatal Intensive Care Unit to be further stabilized.
Welcome to Planet Earth, Preston.
After my wife, Michelle, recovered somewhat from the delivery a few hours later, we visited Preston in the NICU. Tubes and wires that fed him and monitored his vital signs were hooked to his tiny but beautiful body in an open cubicle. The ventilator was still down his throat, and he looked so frail, so small to have so many wires and tubes hooked to him. How could they even find a vein to stick an IV needle in it? We could touch Preston, his sensitive red skin seeming so brittle it might come off on our fingers. His tiny, doll-sized hand grabbed our fingers, and we made a connection, telling him we were glad he made it this far and praying he’d continue fighting.
What had we done to cause this painful scene? We had made sure Michelle had proper prenatal care, she wasn’t smoking or drinking or taking drugs or anything that could cause premature labor. There was some stress, but not much more than normal. Michelle had done a lot of walking around a mall the previous day before the morning when her water broke like Niagara Falls and we rushed to the hospital.
But all the doctors, nurses and research scientists we consulted with said the same thing, that premature birth is still largely a mystery in many cases that occurs no matter what you do.
Ramkumar Menon, a scientist at the Perinatal Research Center in The Women's Hospital in Nashville, Tenn., said more research is needed to pinpoint exact causes and help lower the premature birth rate of about 11.6 percent, which has held steady the last few years.
“The government doesn't fund research in this field, which it should fund since care for premature infants can be very costly,” Mr. Menon said, referring to how NICU stays can cost as much as $2,000 per day. Studies in the last two decades have identified factors that contribute to preterm births, such as infection in the uterus, or chorioamnionitis, fertility treatments, twin gestations, smoking, drug use, previous preterm delivery, stress, placental abruptions, inflammatory responses, even race.
Regardless, in our case it didn’t really matter why it happened; we just had to deal with it. My son’s first few weeks were a blur. We got to know the fine doctors, nurses, therapists and others at the three-year-old, 10-bed NICU fairly well those three weeks. It was hard coming and going, the house feeling empty, not wanting to leave Preston in the hospital.
Looking back with time to reflect, it was an incredible process. We had no time to think about if we could withstand the long days of going to the NICU in the morning before work, trying to focus on work, going back after work, then sleepless nights, wondering whether our son would make it. We had to do it. We had no choice.
Every time we saw Preston, we knew that whatever we were going through was nothing compared to his battle for breath and life. Each day that he became stronger inspired and changed us in ways we have yet to fully grasp. If you are not touched, inspired or changed by watching your own little child fight to remain with you, nothing in life will touch, inspire or change you. Though his body might have been frail then, we learned our son has the mental toughness and heart and soul of the bravest, strongest warrior/poet.
Preston inspired us as he took on whatever cruel fate life threw him without complaint, without being able to glimpse the finish line, without thought of reward or redemption. It was a pure struggle, one that cut life to its essence and reaffirmed in us what is really important. His was as much a spiritual struggle as a physical and mental one; consequently we spent a lot of time praying, as undoubtably even parents who don’t believe in a Higher Power would in this situation.
Born at 32 weeks, Preston’s survival odds were good and have improved with better technology and medication. Studies show that babies born 13 weeks or less premature like Preston have better than a 90 percent chance of surviving. A decade or so ago those odds for such babies were more like 50-50. There were babies born a month or more earlier than Preston in that same NICU, including two weighing less than two pounds. And now about 50 percent of those especially delicate ones survive.Even babies weighing less than a pound have come through; the Guinness Book of Records lists the smallest surviving baby at 9.9 oz., born in 1989 at Loyola University Medical Center in Maywood, Ill. That child was doing well, as of late 2001, said hospital spokesman Michael Maggio, who worked for the hospital when she was born. “She was the size equivalent of a 19-week-old, which is amazing,” he said. “I don't remember there being any major complications during her stay here.”
Loyola’s 50-bed NICU, which started in the mid-1970s, has become a national model for state-of-the-art technology, research and innovative clinical care, Mr. Maggio said. One research project concluded that infants thrive and develop more quickly at home than in the hospital, and thus the center works on getting babies home as fast as possible, even if they are under three pounds, he said.
Some parents of babies born so small ask that physicians not do much, fearing the case is hopeless and the child will have too many physical and mental problems later in life. But not Donna and Lewis Krause, whose son, Ty, was the smallest surviving baby born at Arlington Memorial Hospital, a larger medical center than the one where Preston was born that has had an NICU since 1984.
Ty was born weighing 1 lb., 1 oz., in March 1996 and spent six months in the NICU, during which he had three surgeries. There was no way they could give up on their son, so they kept on with the 24-hour rituals and vigils for six months without considering anything but that Ty was going to eventually come home, Lewis Krause of Arlington said. “How can you give up when he won't? We just did what we had to do,” he said. “Now Ty's a normal 4-year-old boy.”
At Parkland Memorial Hospital in Dallas, the granddaddy of NICUs in North Texas with the oldest [1975] and largest [102 beds], a baby born there weighing less than one pound at 14 oz. survived, said Dale Talley, the hospital's director of nursery services. Parkland treats about 1,200 infants in its NICU annually, most of whom are premature although some have other complications. In early 2000, Parkland renovated part of its NICU for babies who spend two months or more there, adding such touches as recliners by each bed to allow mothers to cuddle their babies next to the skin, indirect lighting and speakers playing classical music.
Even with such evolving technological care, there are times when nothing will help. In 1997, Hayden Alexander was born 14 weeks premature during an emergency Caesarean section at Medical Center of Arlington. His mother, Harvest Alexander, died less than two hours later from head injuries suffered in an auto accident. Hayden was transferred to the the 34-bed NICU at Cook Children's Medical Center in Fort Worth, which formed in 1978 and has the ability to perform special procedures such as Extracorporeal Membrane Oxygenation, which helps infants with respiratory failure.
Doctors did all they could for Hayden, but he died of cardiorespiratory arrest a week later. “That was an especially difficult case,” said Beth Solomon, Cook Children’s spokeswoman. “Not only was he very small, but he was born under duress.”
Before the 1950s, many more premature babies suffered such fates, as primarily nurses sustained the infants in backrooms at hospitals without the aid of as much as monitors to tell if babies stopped breathing. In the 1950s, many new hospitals featured larger centers for premature infants, and physicians became more involved with treatments like transfusions for jaundice, gastrostomies for feeding, new antibiotics, and mist inhalations and oxygen therapy for respiratory problems. What really galvanized research in neonataology was the tragic death of President John F. Kennedy’s third child, Patrick, who was born six weeks premature and died about two months before his father was assassinated in 1963. Today, weighing more than four pounds, Patrick Kennedy would have more than a 95 percent chance of surviving.
A key medical breakthrough came in the mid-1980s with the use of a synthetic form of surfactant, a chemical that helps infants' lungs absorb oxygen, said Julia Martin, a nurse at Arlington Memorial's NICU since 1984. Before surfactant, only about one-quarter of the smallest premature babies born at 23 weeks or less survived, and now roughly half of them do. “There have been some big changes in this field since I started working here,” she said. “When we first opened, we had to do surgeries on most premature babies the first day. Now with the improvement in technology and medicine, we don't do many surgeries."
Infections are probably the biggest problem babies face in the NICUs, which is why all parents and visitors have to scrub in and wear gowns, said Carolyn Grune, our unit’s nursing supervisor who has worked in NICUs for two decades. Respiratory distress and jaundice are other conditions they have to watch for, as premature babies' respiratory, digestive and circulatory systems usually are not fully developed. Nurses particularly have to watch for apnea, in which an infant's breathing temporarily stops for 20 seconds or more.
Getting parents involved in caring for their babies in the NICU is very important to their development, Ms. Grune said. Most parents can hold their premature infants within a few days, and such actions can speed the bonding and healing processes, she said. “We want parents involved as much as possible,” Ms. Grune said. “We always keep in mind that it's their baby, not our baby.”
For Preston, there were good days and bad days, but mostly good. There was the day we found Preston wearing tiny black eye shades, surrounded by purple lights that baked him to treat jaundice. There was the first day we held and fed him, his wide eyes looking at us intently like he was glad to see us. There was the day Preston's heart rate and breathing went down on three successive checks as the monitors’ bells tolled loudly, and he had to be put on a new monitor, watched more closely and have his bottle and breast feedings slowed. There was the day he seemed to smile as I read a poem I wrote for him. There was the day he was circumsized, something that at first I didn’t want him to go through at that time since he had been through enough.
But eventually the bells stopped tolling for Preston and he came home three weeks after his birth, though still on a heart and respiratory monitor. We went through the nights of feedings and changings every two hours and didn’t really mind. It was a joy to feed him at 3 a.m., his wide eyes locked on you like you’re the most important person in the world. He made me want to be a better person, to work harder, get in better shape, give more.
In a world where horrendous crimes, political scandals and financial rip-offs seem to dominate, Preston renewed my faith that good can prevail. He opened up the world of possibilities again, the buried optimism. It was little short of a miracle that he was with us, after Michelle had a tubal pregnancy and several operations, after three years of trying to get pregnant, after being on the verge of spending unknown thousands for invitro fertilization. Then Preston materialized and ultimately had to struggle just to make it a few weeks. But he was here, and we cherished every precious moment.
Slowly but surely, Preston grew, learned to smile, laugh, cluck his tongue, study the pattern of a flower, scoot along the floor, push himself with a walker, chase after our dogs. At almost seven months old in late August, he outgrew the monitor. And I finally cut off the soiled plastic bracelet put on me the day Preston was born as my pass to enter the NICU. I hadn’t cut it off when Michelle had when Preston came home. It was a little hard to explain why I wore it an extra six months, but I had promised Preston I wouldn’t cut it off until he was off all of the wires, tubes and monitors himself. It remained on my wrist for 203 days as a reminder of what my son went through for us, a small symbol of my solidarity with his plight.
In mid-September, we took Preston to his cousin’s birthday party in Houston, then to the beach in Galveston. We walked along a sidewalk near the litter-filled beach, pushing him in his stroller, taking in the salty, polluted air from the oil-slicked Gulf of Mexico.
Unprovoked, Preston raised a clenched fist and held it there for several seconds, a look of wisdom and confident defiance in his eyes, like he had overcome a great challenge and there wasn’t anything in the world that could stop him. We raised our fists with him as the nearby waves from the sea pounded the sand, laughing and chanting, “Preston Power.” Though he soon took down his fist and the moment passed, it was one of those purely unforgettable scenes that makes you realize what you live for.
Ahead, Preston faces the unknown, as recent studies in the New England Journal of Medicine and American Sociological Review found that premature babies weighing less than five pounds at birth have significantly more behavioral and learning problems than full-term babies later in life. But as he neared his second birthday in early 2002, he had made it without a hint of the need for surgeries and other special medical help that sadly numerous premature babies experience in their first years. With the strength and perseverance Preston has gained in his first few months, I’m confident we can continue to overcome any obstacle.
In October 2000, we took Preston back to the NICU for the first time and talked with some of the medical staff who helped him, as well as other parents going through what we did. One couple, Michelle and Kelvin Peterson of Arlington, had lost a daughter four months before her twin sister, Kelsi Ciara Peterson, was born at 32 weeks just under 4 pounds. “It was hard, real hard,” said Kelvin Peterson, pastor of Christ Community Church in Duncanville who also drives a Dallas Area Rapid Transit bus. “All we could do was pray for our little girl….But she made it, and we feel very blessed.” Kelsi Ciara, like Preston, came home within three weeks.
Sometimes now, I view the video my sister, Kathy Roffee, took of Preston’s birth, seeing how small and fragile this now strong, active little boy once was, and it’s painful to watch and remember. But such reminders are important parts of the process of parenting a child born premature. They make you remember what your child overcame and give some perspective to the somewhat overwhelming responsibilities of parenthood. And they make you understand the importance of sometimes raising a fist, glad merely to be alive.
McKenna's birth on Nov. 8, 2002, was much easier. We were much more careful about making sure Michelle stayed off her feet as much as possible and did not go on long walks. We also got her to the hospital at the first sign of major pain, and several times medical staff stopped the labor.