Children’s Hospital of Philadelphia Launches Single Ventricle Survivorship Program

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Program open to all families with a child born with a single ventricle heart defect

Single Ventricle Survivorship Program team members: Kathryn Dodds, RN, MSN, nurse practitioner, David Goldberg, M.D., pediatric cardiologist and Jack Rychik, M.D., director and pediatric cardiologist.

Survival alone is not adequate — we must improve quality and duration of life. As time goes on for these patients, it has become clear that they face a multitude of challenges and that a multidisciplinary approach is vital.

In the United States each year, more than 3,000 infants are born with a form of single ventricle heart defect. A single ventricle defect occurs when one of the heart’s ventricles is too small or under-developed to pump blood effectively to the body or lungs. Less than forty years ago, single ventricle heart defects were fatal. Today, with early intervention in infancy, most children with single ventricle defects are surviving.

The Cardiac Center at The Children’s Hospital of Philadelphia has launched the Single Ventricle Survivorship Program in order to research and develop interventions and therapies aimed at improving the quality and length of life for those children who survived surgery for single ventricle birth defects. This program is a one-of-a kind offering to families who have a child or young adult living with a single ventricle heart defect.

“Early corrective surgery can alter the circulatory system and heart of most single ventricle patients allowing them to survive past infancy, in fact many are living into their teens and twenties,” says Jack Rychik, M.D., medical director of the Single Ventricle Survivorship Program. “However, many are experiencing serious complications, including difficulty in exercising, growth and puberty delays, liver disease, and gastrointestinal and lung disorders.”

Families whose children have surgery or other procedures at CHOP take comfort in knowing the Cardiac Center team and Single Ventricle Survivorship Program will be with them for years, helping immediately if problems arise. The program is open to patients living with a single ventricle from across the region and the entire U.S.

The Single Ventricle Survivorship Program is led by Jack Rychik, M.D., but is composed of a multidisciplinary team including cardiologists, gastroenterologists, hematologists, hepatologists, endocrinologists and pulmonologists. The need for a team of this nature is highlighted by the most common complications faced by these patients.

This year, the 55th Annual Daisy Day Luncheon and Fashion Show benefits the Single Ventricle Survivorship Program. The Daisy Day Luncheon is one of the largest daytime fundraising events in the Philadelphia region. This elegant affair attracts a variety of individual and corporate benefactors who share a commitment to advancing pediatric healthcare. The event includes a fashion show, a silent auction and raffle, and the opportunity to learn about fascinating medical advancements that benefit children. The featured designer this year is Gilles Mendel of J. Mendel showcased his Fall line.

This year’s Daisy Day fund will help fund groundbreaking research, the establishment of new clinical protocols, new databases and other research tools. The fund will also support the program’s emphasis on expert consensus, as it tries to develop novel solutions for complications that arise from single ventricle defects.

Dr. Rychik clearly states the importance of this effort, “Survival alone is not adequate — we must improve quality and duration of life. As time goes on for these patients, it has become clear that they face a multitude of challenges and that a multidisciplinary approach is vital.”

The Children's Hospital of Philadelphia was founded in 1855 as the nation's first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country, ranking third in National Institutes of Health funding. In addition, its unique family-centered care and public service programs have brought the 516-bed hospital recognition as a leading advocate for children and adolescents.


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Joey McCool Ryan
Children's Hospital of Philadelphia
(267) 426-6070
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