Comprehensive Guidebook for Families of Kids with Congenital Heart Defects

Introducing the Mended Little HeartGuide, a Comprehensive Guidebook for Families of Kids with Congenital Heart Defects

The digital Mended Little HeartGuide is available. The guide was developed to empower families to feel confident as they care for their child with congenital heart disease. The CHD journey can be so frightening and challenging, but we also know that parents and caregivers can do very well if they have the right information and resources. Families, caregivers and hospitals are now be able to access the information they need – anywhere, anytime – by going to Mended Little Hearts was able to debut this product at the PICS conference in Las Vegas. Learn more about the Little HeartGuide and this partnership between St. Jude Medical and Mended Little Hearts.


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Nick’s New Heart now on ibooks

Nick’s New Heart (AppleID: 978003869) is now available on iBooks.

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Another person with CHD living to adulthood

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New Ped Policy

I asked you to comment a few months back on a ped policy with United Network for Organ Sharing. It has been reworked some, to the better, I believe. The gest is that if a doctor is going to be the transplant surgeon or the lead doctor he or she has the experience to do so. I encourage you to agree with the proposal.





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Help parents track developmental screenings


Universal developmental screening is a great way to make sure the 1 in 4 young children at risk for developmental delays or disability are identified and receive the services they need to succeed and thrive alongside their peers. Help the families in your practice track and share their child’s screening history and results by providing them with a free printable version of the Developmental Screening Passport provided by Birth to 5: Watch Me Thrive.


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Transition QuickGuide on health care and career planning

Got Transition has partnered with the Office of Disability Employment (Department of Labor) and the Youth Transitions Collaborative to create a Transition QuickGuide for youth and young adults (ages 12-30), including those with disabilities and chronic health conditions. The QuickGuide includes information and resources about health insurance, self-care management, transition from pediatric to adult health care, decision-making, and career planning to help young people manage their health care needs in order to make their career goals a reality.

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Introducing a Public Health Framework for Congenital Heart Defects


The Congenital Heart Public Health Consortium (CHPHC) has developed a frame work that identifies the core components of a public health approach and how those apply to children and adults living with congenital heart defects. Key aspects of the framework address the progress made in recent years as well as the continued disparities in surveillance, policy and health outcomes. The framework is intended to serve as a catalyst in raising awareness of the public health opportunities to reduce risk and improve long‐term outcomes for those living with congenital heart defects. Learn more about the CHPHC and the framework on the web site.


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New Wal-Mart Manager

Nick is in the Wal-Mart Managers program. We are proud to have him employed. Mr. Wal-Mart will soon be a co-manager at a local store.

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Share your story with CDC


CDC is hoping to increase visibility and awareness of birth defects by sharing personal stories of individuals and families affected by them. Through these stories, CDC is trying to present a face behind the numbers, demonstrate how these conditions impact people’s lives, and emphasize why public health research on birth defects is important. Stories will be featured on the CDC website and social media channels. CDC is looking for stories on different conditions from different perspectives in an effort to highlight a variety of experiences. The deadline to submit stories (including the photos and signed waivers) is Monday, August 31st. Families can submit stories by emailing

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Lifelong care for Adolescents and Adults with a CHD

As people born with congenital heart defects (CHD) age, there are a variety of occurring issues that are not often well understood. These include your emotional and social needs; the benefits of exercise; living long enough to develop new health issues unrelated to your CHD; end of life discussions; and issues for women such as pregnancy and birth control. Visit to learn more about living with a CHD.

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