Pump sustains boy for 234 days until heart arrives
On Feb. 6, 5-year-old Jason Zhao from Vallejo, Calif., received the best Valentine's gift he could ask for—a healthy new heart. But Jason, whose own heart failed last June, wouldn't have lived long enough to accept the transplant without the assistance of a mechanical external pump known as the Berlin Heart. The device kept Jason alive for 234 days at Lucile Packard Children's Hospital, longer than any other child in North America. Only three other children in the world have survived longer than that on the pump.
It's a record with risks. Contact with such non-natural substances as the plastic and metal parts of the device make blood more likely to clot, and anti-clotting medications increase the chance of dangerous bleeding. Jason amazed his doctors by surviving these and several other life-threatening complications during his nearly eight-month wait. The most recent, a major stroke that robbed him of his ability to move and speak, occurred only a month ago.
Things looked grim. "The doctors told us that unless he recovered significantly it was unlikely that he would ever get a transplant," said Jason's father, Guanglin Zhao. "At one point we felt that we were at the end of the road, but the doctors and nurses never gave up."
The stroke meant that Jason had to be removed from the transplant list. Then, he astounded everyone with an unbelievably rapid recovery that included talking and moving. He was re-listed just two weeks ago. Now his parents and his Packard Children's "family" of doctors, nurses and staff are celebrating the beating of Jason's new heart.
"Dr. Rosenthal was so happy when he told me they might have a heart for Jason, he gave me a big bear hug," said Zhao. David Rosenthal, MD, is the director of Packard Children's heart failure program and associate professor of pediatrics. "Some of the nurses seemed even happier than my wife and I."
Jason owes his life not just to the Berlin Heart and the donor's family, but also to Stanford's Norman Shumway, MD, PhD, whose work made heart transplants a reality. He died last week. [For his obituary, see pages 1, 8 and 9.] Indeed, Jason's operation was performed by the Norman E. Shumway Professor in Cardiovascular Surgery: Bruce Reitz, MD.
"Although the Berlin Heart has been life-saving for a number of patients here, there is no long-term substitute for a real heart," said Rosenthal. Five other Packard Children's patients have used the device since July 2004, when 5-month-old Miles Coulson became the youngest infant in the country to be placed on a Berlin Heart.
Jason's harrowing journey began about 18 months ago when his parents noticed that he had lost his appetite and seemed unusually tired. An X-ray revealed that his heart was abnormally large—a condition called cardiomyopathy that can occur for a variety of reasons. The weakened muscle was not able to pump blood efficiently throughout his body.
The condition can sometimes be managed with drugs, but by May 2005 it had become apparent that Jason needed a heart transplant. When he suffered a cardiac arrest in June, Rosenthal and his colleagues knew they needed some way to support Jason's failing heart until a donor organ could be found.
Although it's one of the few pumps small enough for infants and children, the German-made Berlin Heart is not yet approved by the Food and Drug Administration for routine use in this country. Individual waivers are granted by the FDA on a case-by-case basis. Jason was temporarily placed on a heart-lung bypass machine until the device was implanted on June 18.
Jason actually had two Berlin Heart pumps: one to supplement the function of the left ventricle, which pumps blood throughout the body, and another to give a boost to the right, which sends blood to the lungs. The hockey puck-sized pumps are housed outside the body and connected to the heart by tubes snaking through the chest wall. Wheeling the device around the hospital, Jason captured a lot of attention, and many hearts.
"We're so glad and sad at the same time," said Zhao. "Without this machine, Jacob would have died a long time ago. But in order for him to get a heart another child had to die. It's such a roller coaster. We're so thankful."