First pediatric patient in Canada weaned from Berlin Heart after own heart recovers

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The summer of 2006 started off well enough for 14-year-old Melissa Mills. She had just finished Grade 8 and was spending time with her friends. She was tired and sleeping a lot, which her mom initially chalked up to being a teenager. But the fatigue continued and Melissa started dropping weight. Her mother sought a medical explanation and eventually a chest X-ray showed Melissa’s heart was massively enlarged. She was referred to Capital Health’s Stollery Children’s Hospital in Edmonton, Alberta.

At Stollery Children’s Hospital, doctors determined that a virus or a dilated cardiomyopathy was likely responsible for the damage to Melissa’s heart and she would need a heart transplant. Melissa’s organs started to fail and she became too sick to wait for a heart donor. Doctors elected to implant a Berlin Heart Excor – a pediatric ventricular assist device – hoping to give Melissa time to recover and wait for a heart.

Dr. Holger Buchholz, the artificial heart specialist who works closely with Melissa, explains: “The Berlin Heart is like a holiday for the heart.” In this case, the Berlin Heart did what the best holidays do – give Melissa’s heart a chance to rest and rejuvenate.

Within weeks of undergoing implantation, tests showed that Melissa’s heart was much stronger. Her progress continued and doctors started to follow a special protocol, developed in Edmonton, to train Melissa’s heart to wean off the Berlin Heart.

Melissa was able to leave the hospital for outings with her mother. She went shopping at West Edmonton Mall and even attended a fundraising gala, pulling the portable power source for her mechanical heart along with her.

Eventually, Melissa’s medical team determined that her heart was likely strong enough to support her body by itself again. After 146 days on the Berlin Heart, Melissa underwent surgery to have the device removed.

“I felt both extreme joy and terror at the news,” says Melissa’s mother Sharon, about the January 2007 explantation surgery. “On one hand, we were thrilled with her recovery. On the other, we were scared her heart might not be strong enough.”

Melissa’s recovery makes her the first pediatric Berlin Heart patient in Canada to be successfully removed from the device, not because a donor heart was found, but because her own heart recovered.

“We thought the miracle was that the Berlin Heart would give us time to find the perfect heart for Melissa,” said Sharon. “We are overwhelmed that instead, the Berlin Heart gave her own heart time to rest and repair itself.”

Dr. Ivan Rebeyka, Clinical Leader of the Berlin Heart program, Head of Pediatric Cardiac Surgery for Capital Health, and Associate Clinical Professor, Surgery and Pediatrics, University of Alberta, says, “We are just beginning to understand all the applications for the Berlin Heart.”

“Several years ago we would have considered it next to impossible, that a heart that sick could recover to that degree without requiring a transplant,” Dr. Rebeyka says.

Melissa continues to visit the Stollery Children’s Hospital from her home in Camrose, Alberta for medical monitoring. If her strength and stamina remain strong, her visits will become less frequent. Eventually, Melissa will only need to be checked every six months.

Melissa follows an exercise regime and a heart-healthy diet. She must be vigilant about taking in enough fluid and can’t sleep for more than 10 hours at a time – which can be a pain for a teenager – as it can lead to dehydration, which is hard on her heart. She must also avoid contact sports, which Melissa says is the easy part.

Melissa is now 15 and back at school. She left her (Berlin) heart in Edmonton but remains grateful for its assistance. “The Berlin Heart saved my life. It means so much to me,” she says.

One of the challenges after an artificial heart is placed in a patient is preventing potentially fatal blood clots. The success of the thrombosis team, led by Dr. Patti Massicotte, Clinical Director of Thrombosis, Capital Health, and Professor, Pediatrics, University of Alberta, has given patients the ability to remain on ventricular assist devices for longer periods of time without complication.

Dr. Massicotte and Dr. Buchholz collaborated on the development of the Edmonton Anticoagulation and Platelet Inhibition Protocol, which they recently copyrighted.

“One of the most exciting things that occurred after we started working together as a team was to determine the best ways to manage patients with artificial hearts by combining our expertise,” says Dr. Massicotte.

“Working together in the same hospital gave us the opportunity to combine our expertise and develop safe ways to prevent life threatening blood clots in artificial hearts.”

Dr. Buchholz is equally excited about the work being done by the ventricular assist device team. “For me, the heart is the most exciting and wonderful organ,” he says.

“The fact that we can support this organ with an artificial device while it heals fascinates me everyday.”

Melissa is settling into what her mom calls the “new normal” and is happy to pick up where she left off, hanging out with her friends. “I don’t take life for granted. I know this is all amazing.”