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The Heart of the Matter: As boy weakens, kin wait, hope

Solution for Christopher was clear: He needed a transplant

By CAROLYNE PARK SPECIAL TO THE DEMOCRAT-GAZETTE

This article was published August 8, 2010 at 5:14 a.m.

First in a series.

— No one could hear when baby Christopher was crying.

There were tears in his squinched eyes, and his mouth was stretched in a wide, frustrated wail, but no sound came out. Only his mother knew.

Her arms ached to hold him, but doctors told her she couldn’t - not yet. Even at 1 month old, he was too fragile. So she whispered loving words to calm him, leaning close so he could feel the warmth of her breath on his cheek.

She wanted him to know she was there, would always be there.

It was late December 2009, and Christopher Corban Schroeder was awaiting a new heart to save his young life.

“When they’re vented you can’t hear them cry,” mother Shannon Schroeder remarked, gently stroking his thin fuzz of hair.

So she spent her days at his bedside in the cardiovascular intensive care unit at Arkansas Children’s Hospital, watching over him as he slept, comforting his soundless cries and praying that a heart donor would be found soon.

Taped above his bed was a name tag, which one of the nurses decorated in little brown paw prints, for his nickname, Christopher bear.A balloon swaying overhead read: “For He shall give his angels charge over you to keep you in all your ways.”

Beside Christopher’s head a white teddy bear played a recording, when squeezed, of his father saying “Daddy loves you.”

“George is afraid Christopher’s going to forget his voice while he’s gone,” Shannon said.

Little Rock native and former Arkansas Democrat-Gazette sports reporter George Schroeder couldn’t be with Christopher every day. Now a sports columnist for The Register-Guard in Eugene, Ore., he had to stay in Oregon to work to support his family more than 2,200 miles away.

The couple married 12 years ago at the Bible Church of Little Rock and have two other children, George, 9, and Elizabeth, 10.

Watching over their younger son, Shannon relished the few precious moments when Christopher opened his eyes. She didn’t want to miss a thing.

Sometimes, Christopher even sneaked a smile.

“That means all the world to me to be able to catch him awake,” she said. “When you only have a baby for five or six hours a day, everything he does fascinates you.”

TROUBLED HEART

Christopher’s heart showed signs of trouble while he was still growing in his mother’s womb, months before he was born.

Shannon was 20 weeks pregnant when she and her husband went for a routine ultrasound in late July 2009. Afterward, a nurse said the doctor wanted to speak with them. The kids were there, and George had taken them downstairs for lunch.

“When Shannon walked into the restaurant, before she even said anything, I knew something was wrong,” George said.

“When she told me, it felt like something cold blew through me. The doctor’s words a few moments later were hard to believe.”

Christopher’s developing heart was malformed. The doctor couldn’t see his right ventricle, one of the heart’s four chambers.

The Schroeders were referred to a high-risk pregnancy specialist, and to Dr. Mary Jo Rice, a pediatric cardiologist at the Doernbecher Children’s Hospital at Oregon Health and Science University in Portland.

There, Christopher was diagnosed with hypoplastic right heart syndrome, a rare defect in which the right ventricle is underdeveloped and can’t do its job of pumping enough blood to the lungs.

“It was a very difficult to hear diagnosis,” George said.

But it was just the beginning.

On subsequent doctor visits, more problems came to light. Christopher also had a hole in his heart that allowed uncontrolled blood flow among the heart’s chambers.

Doctors also found multiple defects with the veins and arteries carrying blood to and from Christopher’s heart.

Christopher had two veins carrying oxygen-poor blood from the body to both sides of the heart. In a normal heart, there’s only one such vein carrying oxygen-poor blood to the right atrium.

In another defect, the pulmonary artery - which carries blood from the heart to the lungs - and the aorta - which normally carries blood from the left ventricle out to the body - were connected to the right ventricle.

“We kind of got hit in stages,” Shannon said. “Each time they told us something new I would go online and wrap my mind around each defect.”

At 24 weeks, the doctor gave them the news: Christopher might not survive.

“We were being told he had an unusual and complex heart anatomy,” Shannon said. “I just thought, ‘How is this going to be fixable?’

“In our minds we were thinking we could be planning a funeral instead of celebrating the birth of our baby boy.’”

CAUSE FOR HOPE

But Christopher continued to grow in the months that followed. They went tosee Rice, the cardiologist, every two weeks, and she became more optimistic with each visit.

In October 2009, Shannon flew across the country to Arkansas Children’s Hospital to meet with Dr. Robert Jaquiss, chief of pediatric and congenital cardiothoracic surgery, and Dr. Renee Bornemeier, director of fetal cardiology.

Jaquiss said he had a “great deal of trepidation” when a colleague first told him about Christopher’s case. His particular heart defects were unusual and “would make the heart very, very inefficient.”

But by the time Shannon came to Little Rock, Jaquiss was encouraged. After all, Christopher’s heart had carried him through seven months of the pregnancy.

“With his heart as ill constructed as it was - if it got him here, we thought it would probably get him through term,” said Jaquiss, also a professor at the University of Arkansas for Medical Sciences.

The question was howwell the heart would work after he was born. While it seemed to be doing its job in utero, Jaquiss knew it would be under increased strain once Christopher left the womb.

Neither Jaquiss nor Dr. Steven Langley, the cardiothoracic surgeon Jaquiss recommended at Oregon Health & Science University, wanted to make any predictions on how Christopher could be treated. They knew he would need major surgery, but until he was born, there was just too much they didn’t know.

“No one was talking transplant,” George recalled.

So the Schroeders waited and prayed. They sought support and solace from their family and their faith, yet steeled themselves for the worst.

“I’m a Christian, so I really do believe that if Christopher didn’t make it, his eternity was secure - that he would go to heaven,” Shannon said. “It was just a matter of entrusting his little life with the Lord and saying, ‘I don’t know what’s going to happen, but you do.’”

CHRISTOPHER’S ARRIVAL

Christopher came into the world about two weeks early at 9:23 a.m. Nov. 30 at Doernbecher Children’s Hospital in Portland, weighing five pounds and 13 1 /2 ounces.

They named him Christopher after Shannon’s brother, Chris Malley. For his middle name, they chose Corban in honor of Shannon’s father, John Corbin Malley, but spelling it “Corban” to echo a Hebrew word meaning “a sacrifice or offering to God.”

After months of worry, Shannon didn’t even have time to hold her son before doctors rushed him off, concerned he might need emergency surgery.

“I had the C-section, and they whisked him away. I didn’t even get to see him,” she said.

Babies with heart problems as severe as Christopher’s are often born with blue-tinted skin, a sign too little oxygen is pumping through the blood. It was something doctors had warned the Schroeders to expect, so they were overjoyed to see his perfect, pink-toned skin.

“He was beautiful. He was pink. He didn’t look like a sick baby,” Shannon said.

Christopher was transferred to intensive care and did well at first. His heart seemed to be compensating for its unusual construction. Doctors even said the Schroeders might be able to take him home soon.

“I was able to feed him, and they were talking about possibly releasing him,” Shannon said. “In some strange way, his heart was working for his body.”

TURN FOR THE WORSE

But Christopher’s condition quickly deteriorated.

Toward the end of his second day, doctors put in a feeding tube because they were worried he wasn’t eating enough.

“When he was born, his heart was in fact very marginal and not likely to get him through the first few months of life,” Jaquiss said. “The first few days were very problematic for him.”

On the fourth day, his heart began to fail. He felt cold to the touch, and his skin started to turn blue.

George and Shannon got a late-night call about his declining condition and rushed to the hospital to find him hooked to a ventilator and a heart-lung machine. They were alarmed to see their tiny Christopher surrounded by an array of tubes and machines.

“That was scary,” Shannon said. “His little heart, it wasn’t working anymore.”

The hospital’s heart team,led by Rice, met to discuss Christopher’s options. There were different surgeries they could try, but nothing was a surefire solution. And surgery would put added strain on his already struggling heart.

Doctors came to a consensus on Dec. 7: Christopher needed a new heart.

HOME TO ARKANSAS

George and Shannon reeled from the blow, but there was no time to dwell.

The Portland hospital where Christopher was born didn’t do pediatric transplants, so the Schroeders had to act fast to find a hospital where their son could get the lifesaving surgery.

Their options included hospitals in Seattle, San Francisco and Loma Linda, Calif., but they all were hours from home, friends or family. For the Schroeders, the choice was obvious - they would take Christopher to Arkansas.

After all, George had grown up in Little Rock. The couple had married and started their lives together there. They knew and trusted Jaquiss and Arkansas Children’s Hospital. And they would have a broad network of friends and family nearby to help them through a trying time.

The next hurdle was how to get Christopher there.

Their health-insurance company initially said Children’s Hospital was out of its network, meaning the family would have to cover the bulk of the medical bills. The medical flight alone would cost $42,000 - of which the insurance plan would cover only $6,000.

But the couple decided to head to Arkansas anyway, even if it meant taking on loads of debt. Their son’s life was most important, and they believed God would carry them through.

Over a series of phone calls that day, the health insurer spoke with Children’s Hospital officials and researched the merits of its heart-transplant program. Their insurer agreed to cover Christopher’s care in Arkansas and rolled the flight cost into its coverage.

“That was where we wanted to go immediately,” George said. “It was just a question of whether the insurance and the hospital would get together, and they did - in about six hours.”

Shannon said it was a huge blessing.

“We felt like again the Lord had gone ahead of us and worked out the details,” she said.

The Schroeders learned on a Monday that Christopher needed a new heart. Two days later, the Children’s Hospital “Angel One” air-transport team arrived in Portland.

Shannon boarded the plane with Christopher - enclosed in an incubator - at 6:30 p.m. PST on Dec. 9. Mother and son flew east from daylight to darkness and disembarked at Central Flying Service in Little Rock a few hours later.

George’s sister, Lori Harris of Maumelle, said she and her father were waiting for them when the ambulance arrived at Children’s Hospital and its doors opened, revealing the incubator.

“We saw this plastic box coming toward us, and we just started crying,” she said.

On Dec. 10, Christopher was put on the national waiting list for a donor heart. All the family could do was wait.

ABOUT THE SERIES

Former Arkansas Democrat-Gazette reporter Carolyne Park spent more than six months following Christopher Schroeder and his family. She witnessed his transplant surgery and met with family members at their temporary home in Little Rock, as well as multiple times at Arkansas Children’s Hospital. The details of Christopher’s care and progress came from family visits witnessed by the reporter and numerous interviews with family members, doctors and other medical professionals directly involved in his care.

Front Section, Pages 1 on 08/08/2010

Print Headline: THE HEART OF THE MATTER As boy weakens, kin wait, hope

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