Childrens Heart Foundation


History of the Children's Heart Foundation

The story of The Children’s Heart Foundation begins with the joyful life and premature death of Sam Peterson.
Sam (pictured above), the 8-year-old son of Betsy and Steve Peterson died Jan. 3, 1995, of multiple organ failure brought on by a sudden heart-related collapse. Doctors have never understood why Sam was born with complex heart defects or why he collapsed so suddenly. During his short life, Sam proved that modern technology and a love for life could conquer congenital heart defects, if only for awhile. If Sam were born 20 years earlier, he would not have lived a day after his birth. It is only through research that a child like Sam had the chance to survive and make such a lasting impact on those whose lives he touched.
 
With the support of family and friends, their faith in God and an understanding of the gift given to them through research, Betsy and Steve bravely responded to their loss by creating The Children’s Heart Foundation (CHF). Friends, colleagues and leading medical professionals came forward to form the Board of Directors and The Children’s Heart Foundation was incorporated in Illinois in June 1996.
 
Through 2013, The Children's Heart Foundation has contributed an astounding $7.3 million toward 62 revolutionary congenital heart defect (CHD) research studies. As the country's leading organization solely committed to CHD research funding, CHF dedicates itself to bringing health, hope and happiness to children and families impacted by a CHD.
 
If you have any questions, please contact William Foley, Executive Director, at the following address:
 
The Children's Heart Foundation
PO Box 244
Lincolnshire, IL 60069-0244
 
Tel 847-634-6474
Toll Free 1-888-248-8140
Fax 847-634-4988
 
Email: bfoley@childrensheartfoundation.org or info@childrensheartfoundation.org
 

Fact Sheets

Incidence, Morbidity & Mortality
 
  • Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
  • Congenital heart defects are the #1 cause of birth defect related deaths.
  • Congenital heart defects are the leading cause of all infant deaths in the United States.
  • Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
  • Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.
CHF
  • The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research.
  • The Children’s Heart Foundation has funded over $7.3 million to 62 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada.
  • CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book.
  • CHF has established thirteen Chapters and has volunteers in many US states.
Lifelong Disease
  • Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
  • There are an estimated 2,000,000 CHD survivors in the United States.
  • For the first time, more than 50% of the CHD survivors are adults.
  • 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.
Economic Factors
  • 91,000 life years are lost each year in this country due to congenital heart defects.
  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
General CHD FACTS
  • More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
  • There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
  • In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
Research Allocations & Impact
  • Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
  • In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

It's My Heart

It's My Heart is a resource book for patients and families affected by congenital heart defects. In plain, understandable language It's My Heart provides descriptions of the types of congenital heart defects and acquired pediatric heart conditions your child may face. Along with explanations of the various tests, surgical procedures, and treatments for CHD's, this book also contains helpful diagrams, a glossary of medical terms, and much, much more. It's My Heart was developed over a number of years by a dedicated group of doctors, nurses and parents in a collaborative effort spearheaded by The Children's Heart Foundation.

 
"This book has been a wonderful teaching tool for our daughter as well as our extended family..."
"Great resource particularly for people just beginning the journey into congenital heart defects..."
"Out of the handful of books I found on the subject, It's My Heart seemed to be the most straightforward and objective..."
"I found this book to be so informative that I actually gave it away to a friend I met in a parenting class..."
To order copies of our parent resource book It's My Heart, please click here
For international orders, please contact Rosemary at rwheeler@childrensheartfoundation.org
 
Please allow 2-3 weeks for delivery.
 
The book is also available as an e-book which can be purchased for $9.99. Click here for details and to order the e-book. Once payment has been received, an email will be sent to the address provided with instructions to download the epub file. Be sure to add info@childrensheartfoundation.org to your approved recipient email list and keep and eye on your junk/spam folder.Orders received after business hours Monday-Friday 9:00am-5pm CST will be processed the next business day.
 
 
 
The Spanish version is still in the process of updates and is currently not available. Please check back at a later date.

Get Involved

In the United States, a child is born with a Congenital Heart Defect (CHD) every 15 minutes. Children undergo surgeries and sadly, some die every day from CHDs.
 
We need to understand what causes CHDs and to prevent them. We need to detect and diagnose CHDs as early as possible. While much progress has been made, we need to develop new treatments for CHDs so that children undergo fewer invasive surgeries and improve the long-term prognosis for children with CHDs.
 
We need your support to fund the most promising research to advance the diagnosis, treatment and prevention of CHDs in children.
 
Information for donors
CHF is a 501(c)(3) tax-exempt corporation. All donations to CHF and its chapters are 
tax-deductible.
 
More than 75% of CHDs expenditures go directly to research and research-related education.
 

CHD Screening

CHF supports advocacy in the area of CHD screenings. Many CHD cases are missed prenatally, at birth, or even in the infant stage. The actual number of cases undiagnosed before or after the first year is unknown as data on incidence of CHD is tracked only during the first year.
 

Screening Goals

CHF’s screening goal is to avoid preventable mortality, significant developmental delay, physical disabilities related to brain injury and learning disabilities.
 

Screening Strategies

  • Encourage development of national and state policies for CHD screening           
  • Raise awareness of signs and symptoms of CHD
  • Raise awareness of lives lost due to missed diagnoses
 
Newborn Screening Panel recommended to include screening for severe congenital heart defects.
 
 

Transition & Lifelong Care

Although our name contains the word 'Children', we support research and advocate for all Congenital Heart Disease (CHD) patients regardless of age. We are extremely proud to serve patients and families from before birth through childhood, adolescence, teenage years, adulthood and the elderly population. As the 'first' generation of open-heart surgery survivors age, we are keenly aware of many new significant dynamics in the CHD population.
  • CHD population has more adults than children
  • CHD is a chronic disorder requiring lifelong ongoing congenital heart care
  • Long-term outcomes unknown
  • Risk of additional problems is high
Transition & Lifelong Care Goals
  • Every CHD survivor should be equipped to independently negotiate lifelong cardiac care           
  • Every CHD survivor needing life-long congenital heart care should be transitioned to appropriate Adult Congenital Heart Disease care
Transition & Lifelong Care Strategies
  • Educate on cardiac health surveillance benefits
  • Encourage awareness of care guidelines
  • Encourage education for transition from Pediatric to Adult Congenital Heart Cardiologists
  • Educate patient/families on how to choose adult congenital heart care www.achaheart.org/for_members/clinicdirectory/index.php