American Heart Association now offers a free guidebook to help WA families care for a child with congenital heart disease

PRESS RELEASE

Comprehensive book and digital resources made possible by a gift from Pete and Brandy Nordstrom

Heart to Heart guidebook inside pages

SEATTLE (Friday, December 4, 2020 - Learning that a child has congenital heart disease (CHD) can be an emotional and difficult time for parents and families. Every year at least 40,000 infants in the U.S. are born with CHD and about 1 in 4 will require invasive treatment in the first year of life. The American Heart Association (AHA), a global force for longer, healthier lives, has published a book for families and caregivers, Heart to Heart: A Family Guidebook About Congenital Heart Defects, to help navigate the complex factors involved in caring for a child with CHD. 

The 182-page book covers an extensive range of topics, including the many types of heart defects, medical procedures, coping, and helpful tips for raising a child with CHD. It also includes pages for recording notes and milestones in the child's development.  As a supplement to the book, the American Heart Association has launched on Online Support Network for CHD caregivers in Washington state and included CHD information on its local website, heart.org/pugetsound.

The Heart to Heart resources were made possible by a grant from Pete and Brandy Nordstrom, whose son was born with a heart defect and needed heart surgery as a baby. “When our son was diagnosed in utero with a heart defect, we struggled to find resources to guide us through this new journey,” said Brandy Nordstrom. “It was important to us that our contribution to the American Heart Association was to be something that was needed and practical, something that would directly benefit families in need.  We worked directly with the team at the AHA to learn about the needs and are thrilled with how this guidebook turned out.”

"We only wish we had something like this when our daughter, Shirley, was diagnosed. It was amazingly comprehensive, and we really enjoyed going through the book,” said Brianna Rodriguez of Tacoma, Wash. Shirley was born with a serious heart defect and had open heart surgery at five days old. In the guidebook, Rodriguez penned a message of gratitude for other parents and caregivers.

“We are so thankful to the Nordstrom family and all the volunteers involved in creating the Heart to Heart guidebook. We realized that there was a need for a comprehensive resource, and we’re excited to share it with Washington families,” said Shelli Kind, executive director, American Heart Association Puget Sound.

Copies of Heart to Heart: A Family Guidebook About Congenital Heart Defects will be provided at no charge to families receiving care at Seattle Children's and Mary Bridge Children's Hospital. A free copy may also be requested through the American Heart Association's website, heart.org/pugetsound (Washington state addresses only, one per address.)

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Multimedia Resources: 

Heart to Heart guidebook photos (downloadable)

Heart to Heart guidebook b-roll

Fact sheet: Congenital Cardiovascular Defects(link opens in new window)


About the American Heart Association

The American Heart Association is a relentless force for a world of longer, healthier lives. We are dedicated to ensuring equitable health in all communities. Through collaboration with numerous organizations, and powered by millions of volunteers, we fund innovative research, advocate for the public’s health and share lifesaving resources. The Dallas-based organization has been a leading source of health information for nearly a century. Connect with us on heart.orgFacebookInstagram, Twitter or by calling 1-800-AHA-USA1.   

 

For Media Inquiries:

Francesca Minas, francesca.minas@heart.org or cell 206-683-6226