New resource aims to provide resources to families through every step of their journey

Over 1 million babies worldwide are born each year with congenital heart defects (CHD) – the most common birth defect and the most common cause of infant death from birth defects. This diagnosis leads families on a frightening journey of decisions, emotions and often multiple surgeries, provoking a myriad of questions, often with minimal guidance and few answers. Because the need for information and answers is so great, the non-profit Mended Little Hearts and global medical device manufacturer, St. Jude Medical, Inc., today announced they have joined together to create The Mended Little HeartGuide, a comprehensive digital Guidebook for parents and families of children with heart conditions.

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Multiple studies have shown that families that have a child with CHD experience a range of emotions and financial distress, at a time when they should be experiencing the joy that comes with parenthood. In one study, parents and caregivers of children with CHDs who required surgery within four weeks of birth were shown to be at a higher risk for feelings of distress, particularly the mothers of these children.1 These caregivers reported excessive worry (51.3 percent), financial difficulties (41 percent) and feelings of sadness or desperation (25.6 percent), among many other challenges.2

The Mended Little HeartGuide was written for parents and caregivers by parents, caregivers and medical professionals who understand the daunting challenges these parents will face. The Guidebook covers more than thirty topics ranging from prenatal diagnosis to hospitalization, and then care when the child comes home from the hospital. The Guidebook empowers families with knowledge and the tools that will help them to cope.

The Mended Little HeartGuide guide can be viewed or downloaded online beginning today at www.mendedlittleheartguide.org.

“I know firsthand how frightening and overwhelming it can be to have a child with a heart defect, and how critical it is to have immediate, current and accurate information to help navigate this journey,” said Jodi Lemacks, national program director of Mended Little Hearts, who is also the mother of a child living with a heart defect. “We are so pleased that St. Jude Medical shares our commitment to children with heart defects and was willing to share this project with us; we hope this comprehensive resource will serve as in important tool to help parents and caregivers navigate the CHD diagnosis.”

Despite the large numbers of babies worldwide born with a CHD, many children are treated with adult-sized devices, which may not be optimal. St. Jude Medical and the U.S. Food & Drug Administration (FDA) have long recognized the need for solutions and educational resources to support pediatric patients.

“At St. Jude Medical, we are keenly aware of the impact that having a child with congenital heart defects can have on families,” said Dr. Mark Carlson, vice president of global clinical affairs and chief medical officer at St. Jude Medical. “Through our partnership with Mended Little Hearts and the introduction of this innovative new resource, we are expanding our ability to support parents and caregivers of children with CHD and furthering our commitment to the community while we continue our efforts to develop safe and effective medical devices to fit children’s growing hearts.”

About Mended Little Hearts

Mended Little Hearts plays a significant role in the lives of families with children diagnosed with CHDs. Through its support group meetings, health education to communities, advocacy for policy and one-on-one visits from parents who have endured the same journey, the organization provides answers for families learning their child will receive a life-saving medical device or procedure. Mended Little Hearts is a program of The Mended Hearts Inc., a non-profit, volunteer-based organization providing hope, help and healing to heart patients and their families since 1951. The Mended Little Hearts program works nationally and in communities to support children with congenital heart defects and their families. Learn more at mendedlittlehearts.org.

About St. Jude Medical

St. Jude Medical is a market leader in the research, design and development of electrophysiology and interventional cardiology solutions for pediatric patients worldwide. The company’s mechanical heart valves have long been the gold standard for replacing a failing heart valve and in February, St. Jude Medical announced the launch of the HALO U.S. IDE clinical trial for pediatric patients in need of mitral valve replacement. St. Jude Medical is a global medical device manufacturer dedicated to transforming the treatment of some of the world’s most expensive epidemic diseases. The company does this by developing cost-effective medical technologies that save and improve lives of patients around the world. Headquartered in St. Paul, Minn., St. Jude Medical has four major clinical focus areas that include cardiac rhythm management, atrial fibrillation, cardiovascular and neuromodulation. For more information, please visit sjm.com or follow us on Twitter @StJudeMedicalIR.

For more information on the partnership and St. Jude Medical’s commitment to pediatric cardiology, visit sjm.com/weheartkids.

Unless otherwise noted, ™ indicates that the name is a trademark of, or licensed to, St. Jude Medical or one of its subsidiaries. ST. JUDE MEDICAL and the nine-squares symbol are trademarks and service marks of St. Jude Medical, Inc. and its related companies. ©2015 St. Jude Medical, Inc. All rights reserved.

1 Hearps, S., McCarthy, M., Muscara, F., Hearps, S.J., Burke, B., Anderson, V. Psychosocial risk in families of infants undergoing surgery for a serious congenital heart disease, Cardiology in the Young 2014; 24: 632-639.

2 Hearps, S., McCarthy, M., Muscara, F., Hearps, S.J., Burke, B., Anderson, V. Psychosocial risk in families of infants undergoing surgery for a serious congenital heart disease, Cardiology in the Young 2014; 24: 632-639.

St. Jude MedicalKate Stoltenberg, 651-756-3388kstoltenberg@sjm.comorMended Little HeartsJodi Lemacks, 804-419-7028Jodi.Lemacks@mendedlittlehearts.org

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