Baby's successful heart transplant causes parents to celebrate and to mourn
Boy is the youngest U.S. patient to receive special heart pump
Miles Coulson, the 6-month-old boy who survived for more than seven weeks with the aid of a German heart pump, is preparing to leave Lucile Packard Children’s Hospital with a new heart.
Miles, whose own heart had failed him, received a heart transplant on Sept. 4, a day his parents still remember with bittersweet feelings.
“We were kind of shell-shocked. We were stunned at first, then very excited,” said Miles’ mother, Leigh Bills. “We had lots of mixed emotions. It’s hard to reconcile your good fortune with someone else’s misfortune.” She explained that she and her husband knew that another child had to die for their son to be saved.
The donor, they learned, was an 11-month-old boy from San Francisco who succumbed to head trauma. The boy’s mother went public with the story a week later with a strong message in support of transplantation. “She was really hoping the heart would be strong for Miles,” said Bills, tears welling in her eyes. “It really touched me. She was rooting for Miles.” The plum-sized donor heart proved to be a good match, and the four-hour surgery to implant it in Miles’ chest went smoothly, said Bruce Reitz, MD, chief of cardiothoracic surgery. He was off the respirator within 48 hours after the surgery and began steadily improving, gaining weight to add to his chubby cheeks.
Miles would not have been able to withstand the procedure had it not been for a device known as the Berlin Heart, which has been used only three times before in this country and never before in such a young child, Reitz said.
Though adults with heart failure may benefit from a few different heart pumps, infants aren’t so fortunate. So as Miles’ health began to deteriorate, his doctors at Packard looked to the rare German device to provide temporary support until a new organ might become available. It was a major undertaking, including special approval from the federal Food and Drug Administration, to get the device here, but it proved well worth the effort, said David Rosenthal, MD, chief of the pediatric heart failure program at Packard, who stayed up nights preparing the unique protocol.
“It turned out to be a device that’s easy to operate, reliable and life-saving,” Rosenthal said. “I don’t see how Miles could have made it without it.”
The heart pump essentially resuscitated Miles, helping restore his kidney and liver function. The blue-eyed baby, who had been gray and unresponsive before, gained a healthy pink glow. He seemed pain-free while on the pump, his mother said. “He was alert and happy, so it gave us good memories, in case something happened,” she added. “We hadn’t had that before.” But the device is only a temporary fix, good for perhaps three months, Reitz said. Blood-clotting and infection are constant threats. Only a permanent new heart would do, so Miles was indeed fortunate to find one.
“I’m really pleased because we’ve had some other children who have waited (for hearts) and not been able to get them,” Reitz said. “Seeing them develop complications and not get a transplant was very, very hard. So the fact that we’ve been able to do it with one child means we may be able to do it for others.”
Reitz praised Rosenthal for paving the way for use of a new device that may serve as a “bridge” to transplant for other young children. “He’s laid the groundwork for an easier pathway to this type of support for kids, not only at Stanford but at other centers around the country.”
Miles still faces multiple issues when he leaves the hospital. He will leave with an arsenal of drugs, including immunosuppressive medications to help prevent his body from rejecting the new heart. He’ll be tested regularly for signs of rejection, Rosenthal said.
Miles will have to learn simple things, like how to eat; he’s been fed through a tube for most of his short life. He’ll have to avoid infection, not an easy matter for a tot with an active 2-year-old brother. But his chances of living the normal life of a child are relatively good: 85 percent of children with transplanted hearts survive the first year, and 70 percent live five years or more, Rosenthal said.
Miles and his family will live in a local home for the next several months so he can be monitored at Packard. His mother, who is on leave from her job as an emergency services coordinator, said she hopes they’ll return to their home in the Sacramento area by Christmas. She and her husband, public school teacher Adrian Coulson, have already begun planning for the holidays, she said. It could very well happen if Miles’ grit to date is any guide.
“He’s a trouper,” Bills said. “There were times when we weren’t sure whether what we were doing was the right thing, but he always came through.”