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Adrian Coulson and his Wife, Leigh, were still adjusting to the sleep-deprived but happy chaos of life with a Newborn and a Toddler when Two-Week-Old Miles got sick. Leigh, 32, a Crime-Victim Social Worker, and Adrian, 36, a Music Teacher and Band Director in the Public Schools of Dixon, a Northern California Town of 16,000, were on leave from their jobs.
Leigh and her 21-Month-Old, Matthew, had both been sick the week before, with a low fever, fatigue and mouth sores. They recovered, and she figured it was just another harmless virus. But now Miles seemed to be coming down with it: He was sleeping more than usual, and eating less. On the morning of April 14, 2004, he woke before dawn but barely nursed. Miles had been a big, hungry Baby who never missed a feeding. When Adrian went to check on Miles in his crib and found that his arms and legs were cold, even though it was warm in the house, he knew something was seriously wrong. Miles's skin was mottled, with strange red and white splotches.
By the time they arrived at their Pediatrician's Office next to Sutter Davis Hospital, Miles was struggling to breathe. He looked so vulnerable in his little onesy. Adrian recalls, "We could see his chest working hard." The Doctor examined him and then went with Leigh and Adrian to take Miles straight to the Emergency Room.
Alerted by the Pediatrician, a Team of Doctors and Nurses whisked Miles away for a Chest X-Ray and a Spinal Tap. They determined he needed more specialized care, so in his car seat strapped to a stretcher, with an Oxygen Mask over his face, he was rushed to another Sutter Hospital, in Sacramento.
There, the Coulsons found themselves living every Parent's worst nightmare as their Blue-Eyed Boy was swept into a vortex of Tubes, Needles and Machines wielded by Doctors and Nurses they'd never met. Behind their protective masks were grim faces.
"Your Child is very sick." The words still echo in Leigh's mind. "They never sugarcoated it," she says. "
"They never said he would be all right."
Soon after arriving in Sacramento, Miles was put on a Respirator. His Heart, the Doctors told Leigh and Adrian, was dangerously enlarged and very weak. Whatever virus he had contracted might have attacked his Heart Muscle. Leigh recalls feeling shocked and devastated. "It looked like he might die that night."
Miles was in Heart Failure, his Heart pumping so little blood that his Liver and Kidneys were beginning to shut down. By morning, Doctors said the only way they could keep him alive was with an ECMO Machine(Extra-Corporeal Membrane Oxygenation), like the Heart-Lung Machines used to take over the work of a Patient's Heart and Lungs during Heart Surgery. It was a long shot, they said. But the device might give Miles's swollen Heart a chance to rest and recover.
Attached by two tubes in his neck to the large, whirring machine, limp as a rag doll from Drugs given to paralyze him so he would not fight the equipment, Miles was a shocking and pitiful sight. "He looked awful," Leigh says. "He was big and bloated and red. His hands were incredibly swollen."
Sometimes, he lay in a pool of blood because the Blood Thinner he'd been given caused oozing from the tubes in his neck. It was so painful to watch him in the web of tubes and needles, Leigh says. Day after agonizing day, she and Adrian wondered if they'd made the right choice, or whether it would have been kinder to let Miles die a Natural Death.
At one point, as they leaned wearily over Miles's bed rails, Adrian turned to Leigh and said, "Whatever's beyond this life has to be better than this." Both wept. But they agreed that when it came time for a decision, as long as one of them wanted to take the next step to try to save Miles, as long as one of them thought it was worth it, they would go on trying.
After eight awful days on ECMO, Miles began to rally. He was weaned off the machine on day nine and seemed better for a while, raising the Coulsons' hopes that he'd recover. But in May, those hopes were dashed when they were referred to yet another Specialist, Dr. David Rosenthal, Director of the Pediatric Heart Failure Program at Lucile Packard Children's Hospital at Stanford University in Palo Alto. As he watched the Infant's struggling Heart on an Echocardiogram, Rosenthal delivered horrifying news: Miles would need a Heart Transplant.
Miles was so fragile that Dr. Rosenthal worried he might die waiting. He was thin and pale, and heavily sedated to spare him the discomfort of the Respirator. The sides of his head had been shaved so Intravenous Lines could be inserted through his scalp. "He had kind of a little Mohawk," Adrian recalls. Infant Organ Donors are scarce; Families often wait four to five months in Northern California for an Infant Heart. Miles couldn't wait that long. ECMO was not a continuing option, because it can't be used safely for more than a month or so. Other Mechanical Pumps, implanted in Adults and Older Children waiting for Transplants, are simply too large for Infants.
Dr. Rosenthal consulted colleagues, and the consensus was that the only prospect for keeping Miles alove was a device that had never been tried at Stanford before: a Tiny Pump called the Berlin Heart, used in Europe but not approved in this Country. It had been imported with the FDA's permission and used successfully in four Children in other American hospitals.
Would this machine save Miles's life, or just prolong his suffering? Leigh and Adrian searched their souls, trying to decide what was truly best for him. For days on end, it was all they talked about, over lunch, over coffee, walking the corridors, driving to and from the Hospital. They wondered if it was selfish to put their Baby through more drastic and painful procedures. But how could they turn down his only chance at life? They said yes to the Pump. Dr. Rosenthal made the case to Stanford's ethics panel and the FDA. Both agreed, each within hours, and on July 12, the Berlin Heart was flown to the United States from Germany. It arrived none too soon for Miles.
"He's very pale, almost gray," Leigh wrote that day on a website provided by the Hospital to let Patients' Parents update Family and Friends. "We sit and hold his little hands, but as soon as we let go, they get so cold." Miles's Surgery was scheduled for the next morning.
Outside the Operating Room, Leigh and Adrian kissed Miles goodbye, fearing they might not see him alive again. But their Baby caught the Lifeline they had thrown him. He came through the Surgery in two hours, even stronger than his Doctors had dared to hope. That afternoon Leigh wrote: "He looks great! He is no longer gray, and his hands and feet are warm and pink."The Berlin Heart, streamlined and compact, amazed Adrian and Leigh.
Most of it was outside Miles's body, and, to their enormous relief, he seemed comfortable. The only parts implanted were two tubes. they emerged from openings on the left side of his upper abdomen and entered the pump, a small, round chamber with a clear window, which rested quietly on his belly. Another tube ran from the chamber to a compressor about the size of a filing cabinet, which provided air to run the pump. The System was controlled by a laptop computer. All the equipment took up only a third as much space as the bulking ECMO Machine.
Although Miles suffered several episodes of Neurological Complications, becoming weak on his left side, for instance, the symptoms always cleared up. He gained weight-and strength-and though he could not leave the Hospital, Adrian and Leigh picked up where they had left off, getting to know their Son. Miles was lively and bright-eyed. He smiled often, and began reaching out to swat at the stuffed octopus and turtle that hung over his bed.
The more time Leigh and Adrian spent with him, the more anguish they felt at the thought of losing him. Now that he was stable, they had time to think about the long odds of finding an Infant Heart Donor. As the weeks dragged on, a Transplant began to seem like an impossible dream. On August 12, Leigh wrote: "It is getting harder and harder to hope. I feel stranded in sadness, and the only way out is the tragic gift of a stranger."
Alone with Miles in his Hospital Room one day, she broke down in tears, just as a Respiratory Therapist stopped by to say that he wanted to ask his Church Congregation to Pray for Miles. "We have had so many experiences like this, and each and every time it makes me cry," Leigh wrote.
On Sunday, September 5, the Coulsons learned that an 11-Month-Old Baby had died of a Head Inury in San Francisco. His Heart would be helicoptered to Stanford. "Our joy would be someone else's sorrow," Leigh said.
At 9 p.m., Miles was wheeled into Surgery. As they waited through the night, Adrian and Leigh felt at peace. They had no regrets. They had done everything they possibly could for their Son, and now his fate was out of their hands. "This time I didn't say goodbye," Leigh said. "We were more hopeful. It seemed like no matter what the outcome, he was getting his chance."
And it worked: At 5 a.m., Miles's Surgeon, Dr. Bruce Reitz, tired but smiling, came out of Surgery to tell Leigh and Adrian that their Son had a strong new Heart.
In the weeks and months that followed, Leigh and Adrian learned the intricacies of caring for a Child with a Heart Transplant-the complicated schedule of Antirejection Medicines and Feedings, Doctor Visits, Blood Tests, Echocardiograms, Heart Biopsies and Physical Therapy Sessions to make up for the months in which Miles could not move around and explore as normal Babies do.
By the end of September, Miles was strong enough to leave the Hospital, though he still needed so many Clinic Visits that he and Leigh moved temporarily into a house in Palo Alto. Finally, late in November, they went home to Dixon. During their enghteen month ordeal, Matthew often traveled back and forth with the Family between the Hospitals, Clinics and home. In fact, among his first words were "sick Baby."
Leigh says she couldn't believe how much support and overwhelming kindness her Family continued to receive. For example, on Christmas Eve, a Tree full of Checks and Anonymous Donations was left on their front porch by students from Adrian's High School Band and Church Members.
Even though Miles still takes much of his nourishment through a tube, he's a bit chubby. His physical development is delayed, but Doctors think he will eventually catch up with his peers. His occupational therapist calls his progress "astounding," Leigh says proudly. His favorite toys are a stuffed clown, a gigantic Elmo and a bouncy seat. He babbles nonsense syllables now like most One-Year-olds.
Miles and his Brother, Matthew, enjoy each other's company. Matthew's rowdy, all-boy behavior seems to suit Miles just fine. "I appreciate being home with my Kids and seeing them together," Leigh says.
"We're enjoying being a Family," Adrian adds. Leigh, who has exchanged e-mails with the Mother of the Baby Boy whose Heart saved Miles, says, "Every time Miles does something for the first time, we think of them."

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Shirley Ruth Caron * 1221A Community Place * Indianapolis, IN 46227