Nate Draper, the 10-month-old twin born with a deadly heart condition, has improved so much without receiving a new heart that his surprised doctors at UCLA Medical Center plan to release him from the hospital today.
For months, doctors said Nate needed a new heart as soon as possible, probably by the time he walked, when his body would need better circulation.
Though cautioning that the gray-eyed baby could suffer a relapse, his doctors now say they have never witnessed such a dramatic turnaround in a heart patient. They hope to study Nate's heart for clues that may help other patients experience similar reversals.
Nate and his identical twin brother, Nick, were born in their hometown of Phoenix with dilated cardiomyopathy, a rare condition that weakened their hearts and left the sides of their hearts in cross-shaped jumbles. Nick received a transplant in February.
"Nate Draper is breaking all of the rules," said Dr. Mark Plunkett, the UCLA surgeon who has monitored Nate's care since shortly after his birth.
Plunkett recalled that in March, Nate grew weaker, and Plunkett worried that the baby was weeks away from death.
"What we are seeing is close to a miracle," Plunkett said. "There's no explaining it. Whatever problem created the heart failure in the first place, he has found a way to resolve. I don't know what happened. We just don't understand it."
The good news about Nate's heart is tempered, however, by results from a recent neurological exam showing that the baby's brain is not receiving signals from his eyes.
That means Nate might be blind, a development that puzzled his family and doctors because, while he seemed to have difficulty focusing, Nate has appeared to track moving objects and lights. Doctors speculate that if Nate did recently lose his vision, it might return later.
Dr. Stephen Pophal, director of cardiomyopathy at Children's Memorial Hospital in Chicago, called the latest news remarkable.
"I would have to concur that it is an amazing thing," Pophal said. "I don't know if it is a miracle ... but you don't see a turnaround like this."
Pophal said he was most surprised to hear that Nate has been in severe heart failure for almost a year. If such patients don't improve within three months, "you are not going to get better."
From birth, Nate and Nick have struggled to remain alive. Their journey and that of their parents, Mike and Nicole Draper, have been the subject of a series of articles in The Times.
In their first week of life the twins were airlifted to UCLA's Mattel Children's Hospital. Nick was immediately placed on the heart transplant list. Nate had a brain bleed and was so close to dying that he wasn't eligible for a transplant. Once Nate was healthy enough, he was placed on the list behind his brother.
After seven months of waiting, Nick received a new heart during a difficult operation in which he nearly died. He recovered and was allowed to leave the hospital to live with his parents.
But Nate remained in the hospital, and tests showed his heart was weakening. He became increasingly fussy and often wouldn't eat. Doctors increased to the highest levels possible the intravenous drugs that kept his heart pumping.
By March, Nate's heart barely pumped. Plunkett, the surgeon who transplanted a new heart into Nick, recalls an evening that month when he stood at Nate's bedside in the intensive care unit, cradling the baby's hands.
They were cold and clammy because Nate's circulation was so poor. Plunkett considered putting Nate on a heart bypass machine to keep him alive. The machine would have required Plunkett to open Nate's chest and attach tubes from the machine to his heart. If that were to happen, Nate would have just a few more weeks to live if he did not get a transplant.
"I was really worried. It was day-to-day, hour-to-hour," Plunkett said. "I thought that we were going to have to bite the bullet and put him on the machine."
Somehow, shortly after that night, Nate's heart began healing on its own. Tests showed his heart beating stronger each week. His mood improved, color returned to his cheeks and he gained weight.
By early May, Nate's doctors had reduced the level of his intravenous medications. The structure of his heart was still askew, Plunkett said, but somehow the walls were thickening and the heart had figured out a way to work efficiently. Nate's doctors said he was so healthy that they wouldn't give him a transplant.
"We don't know what, but something happened at the cellular or sub-cellular level that basically began to push the heart back to health," Plunkett said.
Today, Nate's smooth skin has a touch of pink to it. He has chubby cheeks, fleshy arms and weighs about 20 pounds. He laughs, cries, coos and fusses.
The most obvious sign of past trouble is his lack of strength: He has a hard time holding his head up and can't sit up the way most 10-month-old babies can. His doctors believe that once he is outside of the hospital and gets more stimulation he will quickly grow stronger.