Proposed changes to heart allocation policy

Heart You can access the recording of a presentation of those changes here: https://youtu.be/93E9v5_ULxw

Please feel free to share this with anyone else who might be interested.

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January is National Birth Defects Prevention Month!

BDPM_Thunderclap_20151209_v9bJanuary is National Birth Defects Prevention Month! Join us in this nationwide effort to raise awareness of birth defects, their causes, and their impact!

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IDEA for Children with Special Educational Needs

Individuals With Disabilities Education Act (IDEA) for Children With Special Educational Needs—a clinical report from the American Academy of Pediatrics—provides guidance to ensure that every child in need receives the early intervention and special education services to which he or she is entitled. An article about the new report, states: “Lack of communication can exist between those working in the health vs. education spheres” – Paul Lipkin, lead author. Prior articles have indicated indicates that schools may not fully understand the special education needs of children with a CHD and the specifics about their disabilities. Resources for families and professionals are included.

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January is Birth Defects Awareness Month

Congenital Heart Defects (CHD) and other birth defects are common, costly, and critical. Join the effort to raise awareness of birth defects, their causes and their impact.

Here are the facts:

What is a congenital heart defect?

Congenital heart defects (CHDs) are problems with the heart’s structure that are present at birth.

Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe

forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place.

How common are congenital heart defects?

CHDs are the most common birth defects. CHDs occur in almost 1% of births.

An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers

exclude those dying before diagnosis.

Nearly 40,000 infants in the U.S. are born each year with CHDs.

CHDs are as common as autism and about twenty-five times more common than cystic fibrosis.

Approximately two to three million individuals are thought to be living in the United States with CHDs. Because

there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.

Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that

the number of adults living with CHDs is at least equal to, if not greater than, the number of children

living with CHDs.

What is the health impact of congenital heart defects?

CHDs are the most common cause of infant death due to birth defects.

Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.

Over 85% of babies born with a CHD now live to at least age 18. However, children born with more severe forms

of CHDs are less likely to reach adulthood.

Surgery is often not a cure for CHDs. Many individuals with CHDs require additional operation(s) and/or

medications as adults.

People with CHDs face a life-long risk of health problems such as issues with growth and eating,

developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or

stroke.

People with CHDs are now living long enough to develop illnesses like the rest of the adult population, such as

high blood pressure, obesity and acquired heart disease.

CHDs are now the most common heart problem in pregnant women.

What causes congenital heart defects?

Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.

Most CHDs are thought to be caused by a combination of genes and other risk factors, such as environmental

exposures and maternal conditions. Because the heart is formed so early in pregnancy, the damage may

occur before most women know they are pregnant.

Environmental exposures that may be related to risk of having a CHD include the mother’s diet and certain

chemicals and medications. Maternal diabetes is a recognized cause of CHDs. Maternal obesity, smoking, and

some infections also may raise the risk of having a baby with a CHD. Preventing these risk factors before a

pregnancy is crucial.

A baby’s risk of having a CHD is increased by 3 times if the mother, father, or sibling has a CHD.

What are the health care access and cost challenges related to congenital heart defects?

In 2009, the hospital cost for roughly 27,000 hospital stays for children treated primarily for CHDs in the U.S.

was nearly $1.5 billion. In the same year, hospital cost for roughly 12,000 hospital stays of adults treated

primarily for CHD was at least $280 million.

A significant number of adults with CHD in the U.S. report having problems obtaining insurance and coverage for

specialized care.

Compared to the general population, adults with CHD have 3 – 4 times higher rates of Emergency Room

visits, hospitalizations, and Intensive Care Unit stays.

Fewer than 10% of adults with CHDs in the U.S. who need care from specialty adult CHD centers are receiving

this recommended care.

Congenital Heart Defects

Frequently Asked Questions

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Calling all Artists

Raise CHD Awareness – Design a Tie!

The American College of Cardiology (ACC) is looking for a new tie design and would like to use this effort to raise awareness for Congenital Heart Disease. As such, the ACC is hosting a contest for patients, parents and CHD colleagues who are willing to share their artistic flair. The tie will debut in April at ACC.16 and will be available with a profile of the artist and information about congenital heart disease. The winning artist will be profiled in ACC’s communication channels. Additionally, a portion of the sales proceeds will be donated to the ACC’s CHD Quality Improvement Fund, which has been established to support QI efforts in Congenital Heart Disease. Please consider encouraging artists to submit a design for the ACC’s new tie. Deadline for submission has been extended to January 15, 2016. Please see submission details on entry form and via www.acc.org/acpc. Email questions to acpcsection@acc.org.

 

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Pediatric Medical Home Infographics Now Available

 

Download your copy of new infographics on pediatric medical home and practice transformation today! The infographics raise awareness of how children are unique; rapid changes taking place in pediatric practice; and how pediatricians and other child health professionals can advocate for children while responding to changes in practice. The infographics are available on www.aap.org/medicalhome.

 

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Survival of Children With Hypoplastic Left Heart Syndrome

Results from the recent population-based study (Pediatrics, October 2015) indicate that long-term survival of children with hypoplastic left heart syndrome (HLHS) has improved from 0% for those born 1979-1894 to 52% for those born 1992-2005 who had surgery. This population-based study indicates that for children who survive infancy, survival to adolescence is 90%. The authors also indicate that with the growing population of persons with CHDs, including HLHS, living beyond childhood, it is important to monitor for their long-term needs including developmental, behavioral and psychosocial issues.

 

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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 Mendedlittleheartguide.org. 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.

https://itunes.apple.com/us/book/nicks-new-heart/id978003869?ls=1&mt=11

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Another person with CHD living to adulthood

http://news.emory.edu/stories/2015/09/hspub_adults_with_congenital_heart_defects/campus.html

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