As girl lay near death, family prayed to Kapaun
07/27/2013 9:31 AM
07/27/2013 9:31 AM
In October 2006, 12-year-old Avery Gerleman scored a goal in a soccer game.
She did not celebrate. She walked to the sidelines and threw up a gob of bright red blood into the grass.
She told her coach, "I need to get back in there."
The coach sat her down. After that, bad went to worse.
Doctors in Wichita put Avery in a drug-induced coma and pushed a breathing tube down her throat. Avery's lungs filled with blood. Her kidneys shut down.
There was so much air and fluid leaking into her chest that her heart nearly stopped beating from the pressure.
Doctors told Melissa and Shawn Gerleman that their daughter was going to die. Melissa cried.
She and Shawn began to pray; to Jesus and to a priest from Kansas who had been dead for 55 years.
Doctors say what happened next is the most mysterious medical recovery they have ever seen.
Avery's two primary physicians are scientists, with intellectual allegiances rooted firmly in facts and skeptical reasoning. And they are Protestants, with none of the Gerleman family's training in the Catholic traditions of sainthood, guardian angels and miracles.
But the doctors have told the Vatican that Avery's recovery is so unusual that there is no other explanation for what happened: They say it's a miracle.
Avery's parents say Father Emil Kapaun heard the prayers, and tipped the scales in heaven.
* * *
Avery was playing soccer in a tournament in Fayetteville, Ark., when she spit up the blood.
Melissa took her to a hospital there; she told Shawn on the phone that the doctors thought she had pneumonia. By that time, Avery was spitting up a lot more blood.
Melissa took her home to Wichita, and by then Avery was falling asleep or fainting from blood loss. Shawn took her to Wesley Medical Center; Avery passed out on the examining table.
For four days at Wesley, doctors thought Avery was merely dehydrated. But then a respiratory therapist, checking her over, became animated, calling in doctors and insisting that something was disastrously wrong with her lungs. Doctors realized the respiratory therapist was right.
Shawn at first was irritated: "Who the hell is this respiratory therapist who's turning our world upside down?"
Within minutes, he knew she probably saved Avery's life.
Doctors began to work at a frantic pace, scanning Avery's lungs and other organs. What they saw made them work even faster.
They put her on a breathing mask. They said it wasn't giving her enough oxygen, so they put her on a ventilator.
They saw blood in her urine and knew that her kidneys were also failing. They told Avery and her parents that they were ordering emergency procedures while having no clear idea of what was wrong with her.
In her hospital bed, no longer able to talk because of the breathing tube, Avery wrote a note to her father:
Shawn lied to her to keep her calm.
"They are procedures to make you feel better," he said.
After doctors ordered more procedures, Avery wrote down another question:
"Am I going to die?"
They told her no.
But by her bedside, as doctors put her into a drug-induced coma, her parents began to pray.
* * *
In those first frantic days, and in the long days to come, Avery's two main doctors were Michelle Stuart Hilgenfeld, a young pediatric nephrologist in the first years of her career, and Lindall Smith, a pediatric intensivist who had worked in children's intensive care at Wesley for more than 11 years.
Hilgenfeld concentrated on the kidneys while Smith concentrated on all the other organs. All were failing.
Shawn walked past a conference table and saw doctors paging through big, fat manuals, trying to match Avery's symptoms with any illness they could find. Smith later said that at times in those first few days there were as many as 20 doctors and other staff around that table, paging frantically through those manuals for clues.
Shawn saw that they didn't know what was killing his daughter.
The family prepared for a siege. Medical staff wheeled in two recliners alongside Avery's bed, one for Shawn, another for Melissa. They had so many machines hooked up to Avery that all the gear took up two bed spots.
They did not tell the Gerlemans this, but Smith and Hilgenfeld felt sick at heart.
Hilgenfeld, who recently had given birth to her fourth child, had to summon the strength to talk to the Gerlemans every day.
Smith had three boys, two of whom were Avery's age. Like Hilgenfeld, he wore a mask of professional detachment when he talked to parents. But though he had saved hundreds of children at Wesley, he sometimes lost children, too, and he sometimes cried after they died.
Smith said Avery's blood vessels were disintegrating everywhere; all her organs were failing.
"There's not a lot more we can do for her," he told the Gerlemans.
Melissa saw that Smith was pronouncing a death sentence. She glanced over at Shawn, who looked still and calm.
"She will live," Shawn said.
Avery had been a pretty girl, but she lay now unconscious and bloated. To force oxygen into what was left of her lungs, Smith was pumping so much air into her that her body and face puffed out.
Shawn was keeping a diary by then, and at Avery's bedside at night he wrote down names of doctors and nurses and medicines and machines.
He also began to flip through a Catholic catechism book, which contained a series of numbered paragraphs on church teachings about intercessory prayers.
Like many Catholics, Shawn and Melissa believe in praying to saints as well as to God. Shawn began scribbling down paragraph numbers on the blank back page of a church bulletin he'd found at the chapel of his church, St. Patrick's.
The bulletin had been published by the Father Kapaun Guild, an organization dedicated to promoting Kapaun's candidacy for sainthood.
Shawn knew who Kapaun was: a Kansas farm kid turned U.S. Army chaplain and Korean War hero who had died while saving the lives of hundreds of prisoners of war.
Kapaun was still being investigated by the U.S. military and the Vatican — the military to determine whether to award Kapaun the Medal of Honor, the Vatican to determine whether to make him a saint.
He was one of Shawn's heroes.
Shawn began scribbling down prayers to Kapaun.
"Fr. Kapaun," Shawn wrote on Oct. 28. "Take all the prayers said for Avery this week & lay them at the feet of the Lord. Intercede & obtain a miracle for Avery, full & immediate recovery for the Greater Glory of God."
Within days, hundreds of people in Wichita were praying along with Melissa and Shawn. E-mails the Gerlemans received showed that people all over Wichita and the United States began disregarding differences of belief, and prayed Catholic prayers for Avery.
* * *
"All we did in those early days was put out one fire after another," Hilgenfeld said.
They kept Avery breathing with a breathing tube; Hilgenfeld kept her blood from going toxic, in the absence of functioning kidneys, by putting her on dialysis.
Melissa quickly developed a respect for Smith and Hilgenfeld.
Smith, the older doctor, had a noticeably soft-spoken manner, and Melissa felt the anxiety level drop several degrees every time Smith started talking; she sensed from him not only compassion but determination and skill.
She felt the same about Hilgenfeld, the younger physician, who was more blunt than Smith about how things were going. But even the bluntness gave Melissa a sense of confidence: she knew Hilgenfeld wasn't sugar-coating anything.
Both doctors kept bringing bad news.
Not long after Avery was sent to the pediatric intensive care unit at Wesley, Smith said he wanted to perform emergency surgery. The tissue sac around Avery's heart had filled with fluid, swelling so much that it was putting pressure on Avery's heart. They needed not only to drain the sac but put a tube in there to drain fluid into her stomach.
But Avery was now so fragile that Smith knew she would never survive a move to the operating room. He asked a surgeon to cut open her chest right in her room.
The surgeon came to the room. He studied the girl and looked appalled.
"I don't know why are we even considering this," the surgeon said. "She's not going to make it, no matter what we do."
Melissa had followed the surgeon into the room as he came in; she heard what he said about her daughter. She was distraught.
Hilgenfeld was irritated, and she saw that Smith was irritated, too, though he disguised it with his usual gentleness. Smith insisted the surgeon reconsider, implored him to look at the facts with a more open mind.
When the surgeon insisted, in front of her parents, that Avery was going to die, Smith dug in, too, almost begging, with such passion that Hilgenfeld felt deeply moved. At last Smith pulled him aside, showed him X-rays. And pleaded with him some more.
It was a lot to ask. If Avery died when the surgeon cut open her chest, it would horrify the surgeon and everyone else.
The surgeon relented; he did the procedure.
"Fr. Kapaun, take the petition to the Lord," Shawn wrote in the diary. "Lord, forgive me for being selfish. I want a miracle healing.
"Heal her, Lord."
* * *
"Avery," Shawn wrote to his daughter at her bedside, "I remember when you were two, we were at Scott City State Lake camping. There were foothills. You took the lead & said 'come on, guys, we can make it"
Shawn slept only about two hours a night. Melissa took the day shift at Avery's bedside; he took nights and worked during the day at his job at American Family Insurance.
Melissa, a special-education teacher who had just begun work for the Maize school district, was allowed to take time off from her job; she overlapped at the bedside with Shawn enough to tell him how the day had gone, to pray to Kapaun with him and to draw strength.
She told friends and family that had it not been for Shawn she might not have survived.
She saw him stare down bad news every day with courtesy and confidence, and he saw her do the same.
Shawn told Avery stories that she could not hear in her coma. Shawn told her how her mother was.
"I held your hand," he wrote in the diary.
He told her how her sister Haley, a high school freshman, was doing. He told her that Haley loved her and Mom loved her and he loved her.
"11-4-06, 4:20 a.m." Shawn wrote one night. "I ask Fr. Kapaun. I recognize his compassion for sick and injured & I ask him to present my petitions to Lord perfect healing of lungs & kidneys. I add — make this disease go away. Heal her, Lord."
Smith and Hilgenfeld were struck by how calm the Gerlemans looked. Many parents, faced with the impending deaths of their children, will yell at doctors and nurses, curse them in despair.
But every time Hilgenfeld talked to them, Avery's parents were cordial. They asked perceptive questions.
They were not as calm as they appeared. At night, when doctors or nurses arrived in Avery's room, Shawn would wait until they left, then pull a blanket over his head and sob under the fabric.
* * *
Hilgenfeld found what she believed to be the name of Avery's disease: pulmonary renal syndrome.
It is an auto-immune disorder in which the body's defense system goes haywire, and antibodies that defend against germs, viruses and toxins suddenly turn on the body in what Hilgenfeld called a deranged metabolic state.
Avery's antibodies were attacking membranes and blood vessels everywhere, including in the lungs and kidneys. She was self-destructing.
Hilgenfeld ordered what to the Gerlemans sounded like a desperate procedure: therapeutic plasma exchange.
A machine takes blood from the patient and spins it down in a centrifuge, separating the solid blood cells and platelets from the plasma. The plasma is then discarded, along with any of the haywire antibodies, and the blood is put back in the patient, along with new plasma or replacement fluid.
The treatment took two to four hours; over the course of Avery's 87 days in the hospital, she received 10 such treatments, along with kidney dialysis 24 hours a day.
Shawn walked in her room one day and counted 32 machines hooked up to Avery. She had tubes in her chest, her sides, her groin. She had the tube in her throat, and IVs in both hands, both arms and one foot.
Shawn and Melissa did what they could to clean their daughter and try, as he said later, to "let her keep her dignity."
They cleaned phlegm from her face, her neck, her chest. They picked and brushed dead skin from her hands and face.
Their home in northwest Wichita was virtually empty, neglected. Melissa felt like they had abandoned Avery's older sister, Haley, a freshman at Bishop Carroll High School.
But Haley was outwardly as confident and upbeat as her parents: Haley told Melissa she would take care of herself, that Avery would survive, that no one should give up.
* * *
Avery's 13th birthday on Oct. 31, about two weeks into the hospital siege, passed in a blur of the usual crises: she had a high fever; her heart rate was too high; she had staph and a yeast infection; Hilgenfeld was doing another plasma procedure.
Alarm bells on the machines hooked into Avery's body went off again and again.
Avery's organs continued to disintegrate. There were many reasons that Avery would almost surely die.
Hilgenfeld would later conclude that the plasma-cleansing treatment she had ordered for Avery probably stopped the disease from eating through more of Avery's kidney and lung membranes, but by then the damage had been catastrophic, and Hilgenfeld and Smith both thought death would be only a matter of time.
If Avery did not die, she would need constant dialysis, eventually a kidney transplant. Kidneys, if they shut down a day or two, sometimes don't start working again, and Avery's kidneys had been shut down for weeks.
Hilgenfeld thought Avery would probably die, or live in a vegetative state, her brain gone. Smith had saved many children, but had said goodbye to a few who were ruined like that. He knew that a fully crippled child enslaved a family into permanent medical expense, round-the-clock care, and a form of limbo.
Smith had seen some children live inside the ruins of damaged bodies. He had long ago concluded that some things are worse than death.
The doctors did not confide all this to the parents, but both doctors told them enough for them to know the cause was nearly hopeless, and that Avery was slipping ever downward, her tough little soccer-athlete body fighting a last-stand fight.
"We will do what we can for her, but this is mostly between God and Avery," Hilgenfeld had told the parents early on. She still felt that way.
Sometimes things happened that shocked the doctors. Two weeks after he put Avery on a breathing tube, Smith reduced the amount of sedative that was keeping her in coma and pulled out the tube. To his amazement, she breathed on her own, opened her eyes, recognized her parents and tried to mouth words to them.
Smith felt tears in his eyes; he had thought she'd be nearly brain-dead by now, so this seemed miraculous.
Had he known it wasn't the last such surprise, he might have felt more hope, but he didn't. So many other things kept going wrong.
Shawn sobbed under his bedside blanket in Avery's room again on the night of Nov. 8. Sometimes when the staff changed Avery's bedding, Melissa and Shawn would lift her up so the nurses could change the sheets; they lifted her easily.
Eventually she lost so much weight that Shawn could hold her in the air without bracing his elbows on his torso, as though she were no more than a cornstalk. She had entered the hospital weighing 98 pounds. At her weakest, she weighed 66.
The parents massaged and moved her legs, which were growing stiff from lack of use. They fluffed her pillows, arranged her feet and legs so she would be more comfortable.
At 1:45 on the morning of Nov. 9, Shawn, feeling desperate, prayed a prayer over Avery and left the hospital. He drove north from Wesley to St. Patrick's on North Arkansas; he went into the small adoration prayer chapel near the church.
The chapel was open all hours, with a tiny altar and a communion wafer exposed.
Shawn knelt and prayed. Then he laid face down on the floor before the altar, resting his head on his hands. He did not so much pray as beg.
"Heal my daughter," he said. "Free her of this disease. Hear me O Lord, may I have a fraction of the faith, may it be enough to heal my daughter."
Read Part II
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