Back from brink: Blood infection almost lethal to 7-month-old
The transport team had little hope that 7-month-old Anthony Heavilin would survive the trip to the pediatric intensive care unit at Children's Hospital for treatment of a deadly blood infection.
They didn't think he'd even make it from the bed to the stretcher and portable ventilation equipment they'd brought along, they later told Anthony's mother, Jamie Heavilin.
At home in Weirton, W.Va., in late February, the boy had become feverish and lethargic. His family took him to Steubenville Hospital. Doctors there arranged to have him flown to Mercy Hospital's five-bed pediatric intensive care unit, where he was found to have pneumonia and a streptococcal blood infection.
In the 24 hours since his symptoms began, the infection had become so severe it was shutting down his organs - his kidneys no longer made urine. Tiny hemorrhages colored his fingers and toes purple and black. The skin on his legs blistered.
"There was nothing else the (Mercy staff) could do," Jamie Heavilin recalled. "They were going to send him to Children's Hospital."
Once the transport team - a nurse, a respiratory therapist and a pediatric intensive care unit doctor - got Anthony to the unit, the staff tried every treatment it could think of. Doctors put in lines and chest tubes, but through the day, Anthony kept losing ground.
"Why is it happening?" Jamie Heavilin asked herself. "What could I have done?"
Dr. Ann Thompson, the unit director, advised a last-ditch effort.
She would put Anthony on an ECMO (ExtraCorporeal Membrane Oxygenator) machine. Blood would circulate out of the boy's body into the machine to be oxygenated and then given back to him, bypassing his heart and lungs. It could give the boy's organs a much-needed rest and give him a chance to fight off the infection.
"The doctor told us he was either going to live on the machine or he was going to die," Jamie Heavilin recalls. "She was that blunt about it. I appreciated that. I needed to hear it."
95 percent survive
Most pediatric intensive care unit patients don't die. The Children's unit has a survival rate of about 95 percent. But there's still a small percentage in which acute injuries are so overwhelming that nothing can be done to save them. In other situations, a chronic disease or an illness that has caused too many complications drains life slowly away.
Letting a life go without an all-out fight is not easy, but to do otherwise risks causing pain without benefit, or as Thompson puts it, "ritual instead of healing."
She says: "When you get to the point where the injury is so severe that you don't think you have any reasonable chance at allowing the child to live a reasonable life, that's when we get to thinking, `Are we doing harm?' ". . . It probably isn't a rare attitude to view (illness) as a sort of battle between the child and some force," she says. But for the professional, the battle must not be a personal one.
"I think physicians get into trouble when it's a personal failure if a patient dies, if something goes wrong," she says. "I examine that all the time. God knows, I've had that conversation with myself a thousand - ten thousand - times."
The experts tend their patients with highly technical tools and expertise, but family members can still wipe mouths and fetch drinks of water. The parents need to know they have the power to care for their child, says nurse Rose Faber.
"If it's the kid's last hours, I don't care if the parents sit (at the bed) all night. They can be in the bed, that's fine, as long as I can do what I need to do."
When there is no hope left, the professionals try to make sure the parents get to say good-bye. At times, Faber has doggedly given blood and other treatments to children who are near death.
"Sometimes you're just trying to do that because Dad was at work and can't get here. You're trying to keep this kid alive until Dad comes through the door."
The treatment works
Forty-five minutes after Anthony started on the ECMO machine, the Heavilins had their first hopeful moment in days. The baby passed some urine - the treatment was working.
To the shock and delight of all, the boy improved rapidly. All the doctors came and looked at him.
Jamie Heavilin knows they never expected Anthony to survive.
"For a while, it was like just one big long day. Like you were dreaming and you couldn't wait for it to end."
She woke from her nightmare as the child opened his eyes and looked at his parents, frightened but very much alive. She had prayed to see once more his melt-your-heart smile, and when it came, it was like seeing it for the first time. She wept with relief.
The pediatric intensive care unit experience is something she won't ever forget.
She and her husband, Darin Heavilin, didn't want to display their excitement as their child got better, because other parents were still struggling to deal with their own fears and hopes.
"It's so crazy in there," she says. "You never know what's going to happen in the next bed.
"I don't know how you can walk into this place and walk out and feel the same way about anything again. It's heart-wrenching."
She plans to tell Anthony about the PICU and that she and his father think of him as a miracle. Back at home, all he has to show for his three-week ordeal is a small blister scar on his leg and a scar on his neck from the ECMO machine.
She will remember that on the day when Anthony left the unit, she told the staff something they've heard many, many times:
"You guys have been wonderful, but I hope I never see you again."