| Leigh Bills and Miles Coulson at Lucile Packard Children's Hospital in 2004.
By the time they got to the appointment, Miles’ breathing was labored, his stomach was protracting, and his skin was mottled in color. Within a few hours, Leigh and Adrian received unimaginable news. A common virus had caused myocarditis, or inflammation of the heart. The statistics were grim: Miles had a 30 percent chance of recovery, 30 percent chance of compromised heart function, and 30 percent chance of death. His kidneys failing, Miles was placed on dialysis and nine days of ECMO (extracorporeal membrane oxygenation). But he was not getting better. “It was heartbreaking. Really awful,” recalls Leigh.
Facing one of the most catastrophic moments of their lives, the Coulsons needed exceptional care, close attention and lots of support. Referred to Lucile Packard Children’s Hospital, they met Dr. David Rosenthal, director of Packard Children’s Pediatric Heart Failure Program.
“Dr. Rosenthal was a godsend,” says Leigh. “He was patient, kind and incredibly generous with his time.” Dr. Rosenthal concluded from an echocardiogram that Miles would eventually need a heart transplant. “Although the prognosis was grim,” recalls Adrian, “we had confidence in Dr. Rosenthal. Right from the start we trusted him.”
At just 3 months old, Miles’ lungs started to fail. He was put on a respirator and, on June 13th, settled in for a long stay at Packard Children’s. During that time, Leigh remembers the special attention given to Miles. “People went above and beyond what you’d expect. Not just the nurses and doctors, but everyone. Everyone was amazingly professional and knowledgeable. And the amount of effort that went into just keeping Miles comfortable was amazing. They were so good about always changing his position, adjusting to make him comfortable.”
| The Berlin Heart
A miniature, external heart-pump attached by tubes rather than implanted, the Berlin Heart had been used on only 49 children in Europe, and had been approved by the FDA on an individual basis for just three other children in the U.S. At the time, the longest a baby had survived on the Berlin Heart was 100 days. With the average wait for a donor heart ranging from 90 to 120 days, the Coulsons decided it was a risk worth taking.
On July 13th, doctors placed Miles on the Berlin Heart. He responded immediately. “His hands were pink and warm,” says Leigh. “I couldn’t believe that after one operation he was so much better.” Soon Miles was strong enough to be taken off his respirator. “The change was monumental,” Leigh remembers. “To be able to interact, kiss his face, and let him move his head around— it was worth all the effort.”
Miles stayed on the Berlin Heart for 55 days. “It was the first time we had with him when he was totally responsive, because he had been so sick for so long.” He had tubes in his chest, but he was smiling, holding hands with his parents and big brother, Matthew.
On September 5th, Leigh was in the room when Miles’ nurse got “the call.” A heart was available for Miles. His four-hour transplant surgery was a success and, “three weeks later we went home,” said Leigh.
The Coulsons look back on the time as one of bad luck, great pain and enormous blessings. “Packard gave us so much. They gave us the information we needed. They always ran a test if there was even a suspicion that one was needed. They were always very proactive in that way, even in post-transplant care.”
Miles’ post-transplant care brings the Coulsons back to Packard every three or four months. They’ve come to trust the staff at Packard as “old friends” on whom they can rely in even the very worst situation. “I knew that even when I can’t be there, Miles is with people who take good care of him. That’s what makes Packard stand out. It’s not just how well they treat the child, but that they take care of the whole family.”