“Little Hats, Big Hearts” Generating an Over-the-Top Response

red hats4

Volunteers for the American Heart Association and Mended Little Hearts are knitting red hats for all babies born in February at participating hospitals to raise awareness of congenital heart defects. They hope to have as many babies as possible in February wear red knit hats so there more people are aware that some babies are born with heart disease.


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Nick’s Heart Cath

Nick had his bi-annual cath yesterday. He got a good report. The only concern is that his coronaries had narrowed a little. This is to be expected after almost 24 years post transplant. Plan is to put him on medicine that will help with that.

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New Affordable Care Act Fact Sheets for Families

Created by the National Center for Medical Home Implementation and the Catalyst Center, these four fact sheets highlight provisions of the Affordable Care Act which benefit children and youth with special health care needs. Each fact sheet is written in plain language, making the content easy to read and understand.

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January is Birth Defects Prevention Month

Birth defects are common, costly and critical. Every 4 ½ minutes a baby is born with a major birth defect. Become an active participant in Birth Defects Prevention Month and join a nationwide effort to raise awareness of birth defects, their causes and their impact.

Not all birth defects can be prevented; however, all women, including teens, can lower their risk of having a baby born with a birth defect by following some basic health guidelines throughout their reproductive years.  This year we are encouraging all women to make a PACT for prevention.

Plan ahead
Avoid harmful substances
Choose a healthy lifestyle
Talk to your doctor

Women and their loved ones can participate in their PACT and take these important preventive steps that can lead to a reduction in the number of birth defects.  Learn more about the effect you can have on birth defects at www.nbdpn.org/bdpm2015.php.

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Healthcare Provider Understanding of CHD Coping Skills for Adolescent Patients and Their Parents

A recent study in the Journal of Cardiovascular Nursing evaluated and compared adolescent patients’ and their parents’ coping strategies and knowledge of congenital heart disease (CHD). While parents demonstrated significantly higher knowledge about CHD than their children, the authors noted that adolescents with CHD who adopt their illness as part of their lives using their own knowledge and task-oriented coping strategies demonstrate higher resilience. Both adolescents and parents who indicated a religious background scored higher on emotion-oriented coping than did those who did not report a religion. The authors concluded that it is essential for healthcare providers to understand how adolescent patients and their parents differ in coping with stress and the degree of their respective knowledge about CHD. Effective intervention plans for adolescent patients should be structured, continuous, and address both the patients’ and parents’ coping skills and knowledge of lifelong CHD care, according to the study.


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New Heart for Hunter

A young man Hunter Cain is waiting on a new heart.  Check out the website and think about helping.



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New, Free Mobile App Educates about Congenital Heart Defects


Cincinnati Children’s Hospital created a new, free mobile app, HeartPedia, that uses three-dimensional, anatomically correct images of the heart to help explain heart defects and repairs to patients and families. The app provides detailed descriptions of a particular defect and has animated videos that describe each defect and repair. Healthcare professionals can use the professionally animated app to switch between normal, defect, and repaired images of the heart, while parents can use it to help explain CHDs to loved ones and friends. App features allow users to zoom in/out and rotate images, view interior and outer planes/cross-sections of the heart, and turn on/off labels of key heart structures.


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Big News

Nick and Lacey are having a baby!!! We are all tickled.

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New Heart Screening Recommendations for People Age 12-25

In a joint scientific statement released last week, the American Heart Association (AHA) and American College of Cardiology (ACC) recommended that healthcare professionals include a 14-point checklist when screening young people aged 12-25 for congenital and genetic heart defects. The statement, published simultaneously in the journals Circulation and the Journal of the American College of Cardiology, noted that initial screening for heart disease using electrocardiograms (ECG) with this age group has not been shown to save lives and should not be mandatory among athletes and non-athletes. Making defibrillators available at athletic fields and public places could help prevent sudden death in the young due to complex, genetic/congenital cardiovascular disease.

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ACHA National Conference, September 5-7, 2014

The 2014 Adult Congenital Heart Association’s (ACHA) 7th National Conference, Translating Quality of Care into Quality of Life, offers the unique opportunity to unite the adult congenital heart community – patients, family members, researchers, and healthcare providers – in one location to share the best in adult congenital heart defect research and resources. This year’s conference is scheduled for September 5-7 in Chicago, Illinois. Registration is open and more information can be found on the ACHA Website.

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