Saving Charlie's Heart: Cardiac device for kids

For kids waiting for heart transplants each day is a gift, but as they wait each day could also be their last. Now, a new version of a device that helped a powerful politician is giving kids more time.

When you're only three, and have four big brothers. You practically have to become a super hero to survive. And little Charlie McMicken is channeling all the super strength he can to ward off a deadly foe.

"He started not eating, throwing up, crying non-stop," said Charlie’s Mom Sarah McMicken.

Shortly after he was born, Charlie was diagnosed with cardiomyopathy.

"He was born with a condition where his muscle cells are not normal,” says Dr. Bob Stewart, MD, a Pediatric Congenital Heart Surgeon at The Cleveland Clinic. “He wasn't able to run around and eventually, it got bad enough where he wasn't able to eat. It was scary seeing him."

But this is changing everything for Charlie. It's The Pediatric Berlin Heart, a similar but smaller version of a device that helped former Vice President Dick Cheney when his heart was failing. In children, it sits outside the body and is connected to the heart by multiple tubes. The device pumps blood to vital organs, helping the failing heart.

"Everything was better quite quickly,” says Dr. Stewart.

August marks Charlies eleventh month in The Cleveland Clinic. For 6 months he's been tethered to his life line.

Sarah McMicken
"If we didn't have that, we wouldn't be here. I mean it saved his life," says Sarah McMicken.

But this is only a temporary fix. Charlie will need a heart transplant to survive and be back with his brothers where he belongs.

"I can't wait to go home and throw the baseball with him," says Charlie’s Brother Ryan McMicken

With the help of a donor, this super little guy will be home soon.

We're happy to report Charlie has received his heart. Doctors say he is doing well.

Before FDA approval of The Pediatric Berlin Heart, emergency access was only given to child patients with special written permission. The device would have to be flown in from Germany, and patients would wait several days to get it. Time many young heart patients didn't have.

MEDICAL BREAKTHROUGHS
RESEARCH SUMMARY

TOPIC: SAVING CHARLIE'S HEART: CARDIAC DEVICE FOR KIDS
REPORT: MB # 3498

BACKGROUND: Cardiomyopathy refers to diseases of the heart muscle. These diseases have many causes, signs and symptoms, and treatments. In cardiomyopathy, the heart muscle becomes enlarged, thick, or rigid. In rare cases, the muscle tissue in the heart is replaced with scar tissue. As cardiomyopathy worsens, the heart becomes weaker. It's less able to pump blood through the body and maintain a normal electrical rhythm. This can lead to heart failure or irregular heartbeats called arrhythmias. In turn, heart failure can cause fluid to build up in the lungs, ankles, feet, legs, or abdomen. The weakening of the heart also can cause other complications, such as heart valve problems. (Source: http://www.ncbi.nlm.nih.gov)
TAKING OVER OUR CHILDREN: Cardiomyopathy is nondiscriminatory in that it can affect any adult or child at any stage of their life. It is a particularly rare disease when diagnosed in infants and young children. Cardiomyopathy continues to be the leading reason for heart transplants in children. Currently there are no published reports specifying the total number of children affected, but it is roughly estimated to be in the hundreds of thousands when all forms of cardiomyopathy are taken into account. According to the national pediatric cardiomyopathy registry, 1 in every 100,000 children in the U.S. under the age of 18 is diagnosed with primary cardiomyopathy. (Source: Children's Cardiomyopathy Foundation)

TREATMENT: Unfortunately, there is no current cure or treatment that can return the heart to normal or guarantee long term survival. Although occasionally children with certain types of cardiomyopathy do improve, the vast majority do not show any recovery in heart function. If detected in the earlier stages, cardiomyopathy may be controlled with long-term drug therapy and placement of a pacemaker/ defibrillator. If the cardiomyopathy is associated with electrical disturbances, heart pacemakers may be implanted to provide stable, coordinated electrical impulses to the heart muscle. If there is a potential for sudden cardiac death, an implanted defibrillator may be considered. The device can recognize ventricular fibrillation, a rhythm that does not allow the heart to contract, and deliver an electrical shock to return the heart to a coordinated stable rhythm. If indicated, there are some implanted devices that are both pacemakers and defibrillators. Severe cardiomyopathies may not be able to be controlled or treated with mediation, diet, or other surgical interventions. In this situation, heart transplantation may be a consideration as a final option. (Source: http://www.emedicinehealth.com)

NEW TECHNOLOGY: When a donor heart is not available during the end stage of heart failure, the implantation of a ventricular assist device is the only therapeutic alternative. Many such devices are designed to provide circulatory support to adults, but very few are available for children and infants, especially in the United States. In children, implantation of ventricular assist devices that are designed for adults carries a high risk of complications, because the low stroke volumes that must be used can result in inadequate pump washout and excessive thromboembolic risk. The Berlin Heart excor(r) Pediatric VAD is a pulsatile assist device that comprises a compressor and pumps (artificial ventricles); it is connected to the heart with cannulas. The device's pumps are designed to provide different stroke volumes: 10 mL (suitable for newborns), 25 and 30 mL (suitable for infants and children with body surface areas <1.2 m2), and 50 and 60 mL (suitable for adults and larger children). These stroke volumes in pumps designed for children of various sizes will enable proper washout of the pumps. (Source: http://www.ncbi.nlm.nih.gov)
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FOR MORE INFORMATION, PLEASE CONTACT:

Denise Davis
Cleveland Clinic Children's Hospital
(216) 444-6710


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