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Abigail and Samuel

"Abigail and Samuel" Continued...

Issue: "Boy Scout dilemma," May 18, 2013

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.

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