NBC NATIONAL NEWS — Adults with heart failure have many options to help keep their hearts beating including several types of heart pumps. The same can't be said for our tiniest patients. Children who have failing hearts only have one option: a transplant. But keeping them alive long enough to wait for a heart is a challenge. Bobby Arnold has seen more than his fair share of doctors. He was born with a heart defect that required three surgeries to fix.
But his little heart could only handle the first two.
Dr. Andrew Lodge, of Duke Children's Hospital says, "his heart function declined progressively to the point where he had to be hospitalized."
Doctors put Bobby on the transplant list where most children wait an average of four months for a donor heart. But many of these young patients don't have that much time. In the past doctors have had to put these children on ECMO, an invasive machine that acts like a child's heart and lungs.
Dr. Robert Jaquiss, Chief of Pediatric Heart Surgery, Duke Children's Hospital says "these are children or patients who are confined to a bed, on a ventilator, heavily sedated, and on a blood thinner with a technology that is only good for a week or two at most."
A process that doesn't help them prepare for major surgery. Dr. Robert Jaquiss is the Chief of Pediatric Heart Surgery at Duke Children's Hospital. He was part of a clinical trial testing the Berlin Heart, a mechanical heart that takes over the job of pumping blood through the body. Patients with the pump can get out of bed and eat regular food. And they can stay on it for weeks.
Dr. Jaquiss says "90% of children who got one of these pumps survived to either get a transplant or until their own hearts recovered."
This is the only device available to treat children who are waiting for new hearts but it is not FDA approved. Doctors have to get permission from the agency each time they want to use the Berlin Heart in a child then they have the device flown in from Germany. Bobby had the Berlin Heart implanted in February and was healthy enough to have a heart transplant in March.
Not only is he living, he's thriving and ready to tackle toddlerhood. In July an FDA advisory panel recommended the agency approve the Berlin Heart for use in the US. FDA representatives say they are working as quickly as possible to make a decision and hope to have some news soon.
As many as 20% of children will die between the decision is made that they need a transplant and until a transplant donor heart becomes available.