Life with a premature baby is a journey with sharp cliffs, switchbacks, and beautiful views. Some trails descend to valleys, others snake to mountaintops. One couple from Evans, Ga., has traveled it all.
Married in 2007, Robin and Derrick Trafford, 32 and 33, were unable to conceive naturally and turned to in vitro fertilization. Their fertility specialist transferred two embryos—small enough to fit on the tip of a pen—and Robin became pregnant with both.
Except for a temporary problem with one baby’s placenta, the first few weeks of the pregnancy were uneventful. When Robin went for a 19-week checkup, though, she learned she was 3 centimeters dilated: Going into labor at that stage would mean certain death for the twins. Call your husband, Robin’s obstetrician said. Tell him you’re on your way to the hospital.
Extremely premature births create some of the most difficult moments parents and doctors ever face. Although medical science has greatly improved the survival odds of babies as small as 23 weeks of gestation, it’s still difficult to predict which ones will live or die. Doctors must make difficult decisions about when to push for survival, and when to relent. Parents like the Traffords must decide when to hold on or let go.
Happily for Robin, the staff at University Hospital in Augusta, Ga., was able to halt her labor with a dose of magnesium sulfate. She began bed rest in hopes of maintaining the pregnancy at least until 24 weeks, when the survival chances of the twins—a boy and girl the Traffords named Samuel and Abigail—would be much greater. (A normal pregnancy lasts 40 weeks.)
But a few days later, Samuel’s water broke. The lack of fluid surrounding the baby meant his lungs might not develop properly. Robin’s doctors hoped the ruptured membrane would heal, and ultrasound technicians checked Samuel’s fluid level each day while the Traffords looked on and prayed.
Derrick began keeping a journal to “vent,” he says, and addressed each entry to the twins. Robin says she learned what Scripture means by “be still and know that I am God” during the bed rest.
Robin was able to keep the twins in her womb until 27½ weeks, when Samuel’s placenta separated from the uterus, restricting his supply of oxygen and nutrients. Doctors performed an emergency cesarean section on a Saturday morning in April 2012. Abigail weighed 2 pounds, 4 ounces. Samuel was an ounce smaller.
To help the babies breathe, doctors inserted a ventilator tube through Samuel’s mouth and into his lungs. They provided Abigail with a “CPAP” system that delivered constant, light air pressure to her nostrils.
Twelve hours after delivery, one of the doctors told the Traffords Samuel had taken a turn for the worse. The baby’s lungs, weak and underdeveloped, had burst under the pressure of the ventilator.
Derrick and Robin went to the neonatal intensive care unit, where nurses had been trying to resuscitate Samuel for 20 minutes, using tiny chest compressions. “I don’t think there’s anything more we can do,” said the doctor.
From her wheelchair, Robin recalls praying aloud, “I speak the life of Jesus into my son!” Derrick remembers a stunned look on the doctor’s face as he bent to check Samuel one last time with a stethoscope. “I hear a heartbeat!” the doctor said. “It’s getting faster!”
The medical team worked to stabilize the baby, but told the Traffords 20 minutes without oxygen might have caused irreversible damage to Samuel’s brain.
Back in their room, the couple prayed: “Lord, we have no idea what to do. Just show us. If You want us to fight, we will.”
Parents aren’t the only ones who wonder when to fight or let go. Neonatologist David Levine wonders, too. The Columbus, Ga., physician has cared for newborns for more than 30 years, and currently works at Columbus Regional Medical Center.
To Levine, the question of resuscitation is clear when a premature baby is just 20 weeks developed or less. In those cases he explains to parents there’s no medical technology to sustain a baby that small.
If a baby is a little older and larger he assesses each case individually. He thinks about what he’ll have to do to keep alive a baby that is dying at birth: “We have to put a tube down the baby’s throat, we might have to squeeze on the baby’s chest, we could break some ribs. It’s a very traumatic process. And we’re talking still about maybe a 10 percent survival rate, maybe a 75 percent handicap rate.”
Levine sighs when describing the struggle to combine his pro-life convictions with the pragmatics of premature birth: “I don’t want to cause pain and suffering to a baby who can’t survive. ... [Or whose] chance is very, very high that he’s committed to a lifetime of assistance in living.”
Levine explains the realities to parents before delivery, and often asks them for permission to resuscitate the baby if it comes out of the womb making an effort to live and appearing older than the medical team had expected. “A minute before delivery we’re still not exactly sure what we’re going to get,” says Levine. “And I spend that time praying … that God will make the path clear. If it’s His will for the baby to survive.”
Those moments are the worst in a neonatologist’s life: “They talk about doctors playing God, but we can’t play God. We can make mistakes.”
On occasion, parents have asked him not to resuscitate a baby Levine thought could survive. “That was very difficult for me—very difficult. … There are parents out there who want a perfect baby. And if you can’t give them a perfect baby, then I guess they want to try again.”
He and other doctors have committed to taking parents’ wishes into account in questionable cases, however. Families have taken hospitals to court claiming both “wrongful death”—where the medical team didn’t resuscitate an extremely premature baby despite the parents’ wishes—and “wrongful life”—where the team resuscitated a preemie against parental wishes, resulting in a severely handicapped child.
Some doctors think it’s easier to set a blanket policy: No resuscitation before 24 or 25 weeks. Levine disagrees with that approach—he says it’s just a way of emotionally disconnecting from the decision. As a doctor who believes life comes from God, Levine sees his role as “agonizing” with the parents, praying with them, and showing compassion as everyone seeks to understand God’s will in a difficult situation.
An hour or so after the Traffords returned to their hospital room, a neonatologist told them Samuel was declining again. Robin and Derrick returned to the NICU, where they saw Samuel’s heartbeat slowing on the monitor.
The doctor asked to take Samuel off the ventilator.
“That was a hard decision,” says Derrick. But they could see it was unlikely much else could be done for the baby. “I think God just eased our hearts and gave us comfort that he was going to be OK, because he was going to be in heaven.”
With tubes and IVs disconnected, Robin and Derrick took turns holding Samuel. As he died, Robin sang the words to a song by Rita Springer: I don’t understand your ways / Oh, but I will give you my song … It’s gonna be worth it / It’s gonna be worth it all.
“The Lord just dumped so much grace on us to walk through that time,” she says.
It was time to fight for Abigail. The day after delivery, X-rays showed Abigail’s heart had a valve defect called a PDA that sometimes affects preemies, and was pumping too much blood around her lungs. Rather than growing bigger, after two days Abigail had lost a fifth of her original birth weight. The mountain trail was winding downhill.
When Abigail’s PDA closed within a day or two, it seemed the trail had turned upward. Down again: When Abigail’s belly bloated because she wasn’t digesting her formula properly. Up: When she began drinking from a bottle at five weeks. Down: When Abigail fought infections and her heart rate would suddenly drop—on bad days, up to 10 times an hour. (Nurses tapped her feet to remind her to breathe.)
Sudden cliff: One day Robin was feeding Abigail when the baby choked and turned blue. A nurse grabbed Abigail and patted her back, helping her regain her breath and color. Later, Robin and Derrick wondered how they would bring home a child in Abigail’s frail condition: “On that ride home, we couldn’t even talk to each other,” says Robin. In the car, she resorted to yelling out the motto they had chosen: “We will not fear!”
One of the neonatologists who worked with the Traffords, Cecil Sharp, encouraged the couple to read a Psalm a day—one for each day Abigail was in the NICU. “We’ve never had a baby in here longer than we’ve had Psalms for them,” he explained.
Sharp told me when parents become overwhelmed by the unexpected challenges of the NICU, they need to change their outlook, like changing a TV channel. “Let’s get back to the preemie channel,” he tells them. A preemie has underdeveloped intestines, and wouldn’t normally be drinking milk at its age—so digestion problems are no surprise. A preemie doesn’t have the immune benefits of its mother’s womb—so infections are no surprise, either. When families stop expecting their preemie to function like a normal newborn, they stay hopeful through the ups and downs.
When parents, nurses, or fellow doctors begin worrying about “quality of life” for a particular baby, Sharp reminds them how hard it is to predict medical outcomes. “There are cases where I could say, ‘Wow, I remember worrying about this or that [condition] on this baby, but this child has grown up, graduated from high school. I attended the graduation, and now the child is getting married. … Some have gone to college. … It’s so hard for us to make the argument about quality of life when we don’t have a crystal ball to look down the road.”
Sharp sees his role as not merely helping preemies survive, but helping parents through one of the most difficult journeys of their lives. He wants them to be “joyful in hope, patient in affliction, faithful in prayer” (Romans 12:12).
Abigail, after a bout with a bladder infection, finally came home from the NICU when the Traffords reached Psalm 69: “You who seek God, let your hearts revive. For the LORD hears the needy.”
Today, at 1 year old, Abigail weighs 16 pounds, 10 ounces, takes medication to control her blood acid level, and is finishing up occupational therapy to improve her motor skills. She has almost learned to walk, says “dah-dah” and “bah-bah” (daddy and bottle), and barks at the family dog.
She’s busy, too. While Robin spends 15 minutes or so on the phone, Abigail crawls from the entertainment center to the dog kennel to the entertainment center and to the kennel again, where she repeatedly opens and closes the door. “She’s definitely tenacious and focused. And she has a temper. But she’s super loving,” says Robin.
“She very rarely meets a stranger—she’ll smile at anyone,” says Derrick, who bequeathed her his dark brown eyes.
The Traffords have more hard decisions ahead: They still have five embryos frozen. They plan to implant one this year but wonder if there’s another mountain climb ahead.
Robin says Abigail and Samuel taught them not to grasp anything in life too tightly: “God is faithful. He controls whether we live or die. … We know to raise her with very open hands, because she does not belong to us.”
On April 7, Abigail’s birthday, the Traffords returned to the NICU to visit other parents with premature babies. They handed out cards and pictures intended to give them hope for the journey: The pictures showed Abigail when she was born, when she left the NICU, and when she turned 1.
On the cards they wrote, “Just thinking of you. Love, the Traffords.”
Thanks to modern neonatal intensive care units, a preemie born at 24 weeks of gestation has more than a 50 percent chance of survival. Medical technology has bounded forward since the early 1950s, when doctors realized early oxygen chambers were causing 10,000 babies to go blind. In the 1980s doctors developed a heart-lung bypass procedure and began using surfactant to open air sacs in premature babies’ lungs. More recently, they learned nitric oxide could also improve lung function.
Currently, 23 weeks gestation seems to be a threshold for preemie survival. Below that, the baby’s organs simply aren’t developed enough to survive outside the womb, even with the aid of modern technology. According to the American Academy of Pediatrics, about a quarter of babies born at 23 weeks survive, in developed nations, and only about 5 percent of babies born at 22 weeks survive. The AAP recommends if a baby is born before 23 weeks or weighs under nine-tenths of a pound, doctors generally shouldn’t attempt resuscitation, since the process is painful for the baby and usually futile.
A so-called “gray zone,” from 23 to 25 weeks, creates a conundrum for neonatologists: Because of the uncertainty of pinpointing a baby’s date of conception (doctors normally estimate it from the mother’s last menstrual cycle), a baby may be more or less developed than its assigned gestational age would suggest. Whether a gray zone baby is likely to survive is a case-by-case judgment call.
Even outside the gray zone, preemies often have other medical problems in the womb, decreasing their chance of survival. The uncertainty leaves doctors and parents with hard decisions: If the baby is born and doesn’t look healthy or large enough to survive, should they attempt painful lifesaving measures that may or may not be successful, or simply make him comfortable as he dies? Pro-life doctors and parents wrestle with the question as much as anyone else.