St. Jude Medical and Mended Little Hearts Unveil The Mended Little HeartGuide, a Comprehensive Guidebook for Families of Kids with Congenital Heart Defects
New resource aims to provide resources to families through every step of
their journey
ST. PAUL, Minn.–(BUSINESS WIRE)–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.
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.
Contacts
St. Jude Medical
Kate Stoltenberg, 651-756-3388
kstoltenberg@sjm.com
or
Mended
Little Hearts
Jodi Lemacks, 804-419-7028
Jodi.Lemacks@mendedlittlehearts.org
