Entries in Berlin Heart (3)


One Family, Five Heart Transplants

Stacy and Jason Bingham(HAINES, Ore.) -- Stacy and Jason Bingham of Haines, Ore., already had endured the arduous transplant waiting list until their oldest daughter, Sierra, now 12, found a match for a new heart.

Now, they may have to face four more rounds on the list. All five of their children have been diagnosed with genetic heart abnormalities.

For now, only one of the four additional children, who is being cared for at Lucille Packard Children’s Hospital in Palo Alto, Calif., has been placed on the transplant list. But if all five of the Bingham children receive new hearts, it will be the most heart transplants ever performed for a single family.

More than 3,000 adults and children are waiting for a heart transplant, a minority of whom are children, according to the Organ Donation and Procurement Network. An estimated 400 children undergo heart transplants each year.

Longer survival on the waiting list and a better prognosis post-transplant are some reasons why many children like the Binghams can expect to be treated successfully, according to Dr. Francis Fynn-Thompson, surgical director of the heart transplant program at Boston Children’s Hospital, who is not affiliated in the family’s care.

“Compared to a decade ago, we have options to bridge between heart transplants,” said Fynn-Thompson. “If a child’s heart gives out, we can put them on a device that can act like a heart in the interim.”

Children waiting for a heart transplant face the highest risk of dying compared to a child waiting for any other organ, according to study Fynn-Thompson and his colleagues published in 2009 in Circulation.

“The smallest hearts are the hardest to find,” said Fynn-Thompson.

For child recipients, the ordeal doesn’t end once the new organ has been located and transplanted. The surgery is followed by a lifetime of immunosuppressive medications to counter any possible side effects, including organ rejection. Unlike adult organ transplants, a child-size organ needs to be able to grow as the patient grows.  The child eventually transitions from a pediatric to an adult heart transplant cardiologist.

However, unlike an adult, many infants can be transplanted across blood types because they haven’t developed the antibodies, allowing for most infants to be transplanted without having to wait for a match.

The prognosis for heart transplant recipients are among the best compared to previous years. The six-month heart transplant survival rate increased from 86 percent in 1999 to 91 percent in 2009, according to the Scientific Registry of Transplant Recipients and the Organ Donation and Procurement Network annual data report.

“Our expectation is that their survival will be well beyond 10 years,” said Fynn-Thompson.

Seventy percent of children with heart transplants are alive after 10 years and 50 percent are alive after 15 years, he said.

While pediatric heart transplants are limited by an uncontrollably small donor pool, Fynn-Thompson said the focus should be on helping children who are on the list live longer while they wait.

“Devices like the Berlin heart and other assisting devices coming down the pike are applicable to children,” said Fynn-Thompson.

It’s these methods that can help one child, even five in one family, live long enough before given the heart they need, he said.

Copyright 2012 ABC News Radio


Baby Saved by Smallest Artificial Heart

Alessandro Di Meo/EPA(ROME) -- An artificial heart the size of a pinky finger kept a 16-month-old baby alive for nearly two weeks while he waited for a heart transplant.

The Italian baby, whose name has not been released, had dilated cardiomyopathy, a disease that stretched the muscular walls of his heart so thin they could no longer contract to pump blood. He needed a transplant. But without a suitable donor on the horizon, doctors had to improvise.

“This patient, he was a mascot for us,” said surgeon Antonio Amodeo of Rome’s Bambino Gesu Hospital, explaining how the baby had been in the hospital’s intensive care unit since he was one month old. “I said, ‘He cannot die; I have to do something for him.’”

Amodeo and his team had already tried a Berlin Heart, a scaled-down version of the left ventricular assist device once worn by former Vice President Dick Cheney. But the device, with its tubes that run outside the body, triggered a risky infection. So they turned to a tiny, 11-gram implantable pump invented by American entrepreneur Dr. Robert Jarvik that had only been tested on animals.

“I said, ‘Dr, Jarvik, please help me. I don’t want to lose this patient,” Amodeo said, adding that the hospital needed special permission from the U.S. Food and Drug Administration and the Italian Ministry of Health before proceeding with the unapproved device. “We knew there were only a few animal experiments, but we knew it could probably work.”

And it did work, keeping the baby alive for 13 days before electrical problems forced the doctors to switch back to the Berlin Heart. Two days later, a donor heart became available.

“It’s incredible,” said Amodeo, adding that the transplant, which took place in April, was successful and the baby will be discharged any day now. “We are all extremely happy because the little boy will be in his mother’s hands. He’s going to be fine.”

Copyright 2012 ABC News Radio


FDA Approves Berlin Heart for Kids

Keith Brofsky/Thinkstock(WASHINGTON) -- Friday the U.S. Food and Drug Administration approved the Berlin Heart for pediatric patients waiting for heart transplants. The ventricular assist device is similar to the one worn by former Vice President Dick Cheney but scaled down for children and babies.

"Without that device I wouldn't have my son," said Traci Shaffer, whose 9-year-old son Lane survived 16 months on the Ohio transplant waiting list because of the Berlin Heart.

Lane was born with a defect that caused his heart to swell and eventually fail. With no donor heart on the horizon, Lane needed a Berlin Heart. But because it was still unapproved in the U.S., it was hard to get.

"The doctors said, 'This is experimental, it's not FDA-approved, and here's the thing: You might not even get it in time,'" said Shaffer, who lives in Philadelphia, Ohio.

Lane's doctors had to ask the FDA for emergency access to the Berlin Heart under a provision called compassionate use. Only after approval could they order the device from Germany, bringing the wait time up to seven days.

"The child has to be on death's door before you can even apply for it," said Shaffer, adding that Lane was given seven-to-10 days to live when they started the process. "We've seen kids that couldn't wait seven days. It's very scary."

Lane weighed 35 pounds when his Berlin Heart arrived at the Cleveland Clinic in May 2010 -- his ribs visible through pale skin as he lay curled up in the fetal position. But after the nine-hour procedure to implant the device, Lane started to improve.

"Immediately after the surgery I could see the color of his skin had changed," said Shaffer. "His feet were no longer white and cold; they were pink and warm. His cheeks were rosy. That was the moment when you say, 'This is working.'"

The FDA's decision to approve the Berlin Heart means hospitals can stock the device in a range of sizes -- from walnut-size pumps for babies to fist-size pumps for teens.

"I will sleep better knowing there's a Berlin Heart sitting here in the Cleveland Clinic," said Dr. Gerard Boyle, a pediatric cardiologist at the Cleveland Clinic. "In the middle of the night, if we have a device here we can support the patient immediately."

The Berlin Heart is a temporary fix, though. Like Lane, kids who receive it will ultimately need a heart transplant.

"For families with a child who needs a heart transplant -- and there are enough of those -- we can say, 'We'll try to get a heart, but while we wait we have a plan,'" said Boyle. "This device gives us confidence that the number of patients who die waiting will decline dramatically."

Lane used the Berlin Heart until December 2010, when his parents got the call that his new heart had been donated.

Now Lane weighs 75 pounds, loves sports and motorcycles and is "eating his family out of house and home," according to his mom. But he's not out of the woods yet. He'll have to take anti-rejection drugs for the rest of his life, and he might eventually need another heart transplant.

But Lane, the boy with the "biggest blue eyes and smile you have ever seen," is staying positive and living life to the fullest, Shaffer said.

"I couldn't wait to tell him about the FDA approval because it's something he's been praying for and wanted since day one," said Shaffer, describing her phone call to Lane when she heard the news. "He screamed in my ear and said, 'You're kidding me! No more kids have to die, mom!'"

Copyright 2011 ABC News Radio

ABC News Radio