Florida military couple donates dying infant son's heart to a baby in Texas
By JIM THOMPSON | NORTHWEST FLORIDA DAILY NEWS | The News-Journal, Daytona Beach, Fla. | Published: May 23, 2019
EGLIN AFB (Tribune News Service) — Five minutes. That's how long it takes to walk from the pediatric intensive care unit to an operating room at Sacred Heart Children's Hospital, according to Samantha Butler.
She should know. She made that walk Wednesday evening with her husband, Navy Petty Officer James Butler Jr., and their not-quite-3-month-old son, James Butler III.
They were the final steps the couple took with young James, who had been declared dead shortly after noon Monday from late-onset Group B streptococcus, a bacterial infection. But in accordance with his parent's wishes, James III was kept alive in the pediatric intensive care unit in the hope that he might be able to donate his organs to another young child.
"It's the longest short walk," Samantha Butler said.
As they walked, their son being wheeled alongside them as a nurse pumped a respirator bag to keep his lungs working, the hallway was lined with the couple's family and friends, James Jr.'s Navy family, and hospital staff members in a "walk of honor," a final tribute to the infant.
Still, the walk "was kind of hard," said James Jr., who is assigned to a Navy fighter squadron based at Eglin Air Force Base. "It kind of made it more finalized."
And at the end, outside the operating room, Samantha said, "We literally had just seconds to say goodbye."
Soon after, the infant James' heart was removed, its first step en route to a three-week-old baby somewhere in Texas who needed it. The donation opportunity came just before the parents' own deadline; they earlier had set Wednesday as the day they would take James III off life support.
"We don't know if it was a boy or girl," who got the heart, Samantha said.
The couple worked through LifeQuest Organ Recovery Services, and within a matter of weeks they'll learn more about where their son's heart has continued beating, as well as whether any of his other organs or tissues were harvested for research.
It was an easy, if heart-wrenching, decision.
"I don't think there was ever a question," Samantha said.
She and James Jr. credited a forthright doctor who told them early on that their son's outlook was bleak, which prompted them to think about organ donation. And then there was the knowledge that by donating James III's organs and tissues, they could spare another family the burden of losing a child.
"It is tough," Samantha said. "I wouldn't wish this on my worst enemy. But we find peace and comfort knowing that we will hopefully be helping out some other little baby out there and that our son's heart will still beat on."
Sadly, the possibility of loss still looms, however remotely, for the Butlers. Young James' twin sister, Stephanie, hasn't shown any symptoms of the infection that claimed her brother's life, but her parents will have to keep an eye on her for some days to come, Samantha said.
"There's still a risk that she could have it, but she hasn't shown any signs," Samantha said. "You just watch for fever, the common flu-like symptoms. That's basically how it starts out."
James first showed signs of illness May 4 when he got a fever and his parents took him to Eglin's hospital. From Eglin, young James was taken to the Pensacola hospital, where he stayed until the afternoon of May 6, being treated with antibiotics. For the next two days at home, all was well, but on May 8 something changed.
"It just hit really fast," Samantha said. "He was screaming, he was really listless."
The parents took him to the Eglin hospital again, and he was again transferred to Pensacola. He was put on a ventilator and remained on it until he was wheeled out of the pediatric intensive care unit Wednesday of this week.
"They had suspected brain death almost immediately," Samantha said.
The infant boy was declared dead Monday when a respiratory test revealed his lungs weren't working on their own.
Throughout his time in the hospital, James' parents were by his side, aside from taking time to sleep at the nearby Ronald McDonald House.
"Every moment we were awake, we were next to him," Samantha said.
Stephanie often napped next to him. When she did, Samantha said, James' vital signs showed improvement. During one nap, Samantha said, Stephanie "instantly reached over and grabbed his hands."
Despite that he was with them for only several weeks, James' parents have that will sustain them in the days and years ahead.
"He'd give you like this one-eyed scowl," his dad laughed. "And he tried to pee on me."
For her part, Samantha will remember taking James III to the beach and to the zoo with Stephanie. And, she said, slipping into the present tense with a smile, James III "has the gas of his father."
In the coming years, the couple will tell Stephanie all about her twin brother.
"We'll be honest," Samantha said. "We'll tell her he was strong and was able to give his life to someone else.
"I'm not a very religious person, but I have found kind of a new faith," she added. "In things like this, I have to believe he is going somewhere — he is somewhere, his spirit — and we do have an extra angel out there watching over us."
©2019 The News-Journal, Daytona Beach, Fla.
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