Giving to Golisano Children's Hospital

An Evening with Heart Works

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Heart WorksInspired by the care their son Charlie, a cardiac patient and 2012 Miracle Kid, received at UR Medicine’s Golisano Children’s Hospital, Merredith and Ken Levin started the group Heart Works in 2011. Aimed at extending and improving the lives of other children with congenital heart disease, Heart Works is hosting its second gala event, “An Evening with Heart Works,” from 7 to 11 p.m. Sept. 6 in downtown Buffalo. The organization has raised more than $60,000 for the region’s only children’s hospital that provides cardiothoracic surgery. 

The evening will allow guests from both the Rochester and Buffalo regions to join together in support of the pediatric cardiology program at Golisano Children’s Hospital. The event includes a Chinese and silent high-end auction. Tickets are available for $65 a person and can be purchased at www.heart-works.org.

This year’s Heart Works event is all about Extracorporeal Membrane Oxygenation (ECMO) – a life-support device that saved Charlie’s life. With funds raised from the night, the Levins hope to purchase a child-sized ECMO life-support machine for critically ill children in the Pediatric Intensive Care Unit. In addition, the grateful parents aim to raise enough to provide additional ECMO training, complete with seminars and life-support training, so physicians and nurses feel even more prepared for any circumstance that may arise, adding to the vast knowledge they already have about operating the machine.

“The dedication the Levins have to increasing awareness about cardiac care and fundraising to improve our program is outstanding,” said George Alfieris, M.D., chief of Pediatric Cardiac Surgery at Golisano Children’s Hospital. “Like our cardiac team, they are invested in advancing care for our region’s heart children and we are proud to have their support.”

In 2008, at just 4-months-old, Charlie was admitted to Golisano Children’s Hospital and was diagnosed with a congenital heart defect known as Hypoplastic Left Heart Syndrome. The left side of his heart was much smaller and weaker than the right, forcing his right side to overwork. Charlie would eventually undergo three open-heart surgeries with Alfieris to complete the ventricular repair.

CharlieIn the spring of 2012 Charlie was recognized as a Golisano Children’s Hospital Miracle Kid, but his family and doctors would soon learn that was just the beginning of miracles for Charlie. After his third surgery, in November 2012, Charlie’s new mechanical valve clotted over and stopped working. He was admitted to the hospital again and, after being intubated, his team of doctors and nurses were able to fix the valve. The combination of intubation, a cold, and great stress on his heart, however, caused Charlie to develop pneumonia and his lungs collapsed. At the age of 4, Charlie went into full cardiac arrest. Without an ECMO machine built to fit a child, Charlie’s medical team had to quickly create a version appropriate for his small body. On full life support, Charlie was emergently transferred to Children’s Hospital of Boston, a facility known for its heart transplant center.

After being in Boston for six weeks and undergoing several life-saving procedures Charlie was able to return home. He had to learn how to walk and talk again and now, a year later, Charlie is an active 6 year old. His family knows he still has a long journey ahead, but are excited to see what the future holds for cardiac care in the Rochester region.

“We need to maintain and grow our regional cardiac center so that they can continue playing a pivotal role for all children born with heart defects in our area,” Merredith said. “Charlie’s life was saved because of the ECMO life support and this is our opportunity to save more lives.”

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