Resources

Knowledge is power, and having power over situations that feel out of control will help you make the best decisions for yourself and your loved ones.

Congenital Heart Disease Facts:

  • 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.
  • 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.
  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
  • 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.
  • Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
  • Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
  • 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.

Local Resources

For information about local cardiologist helping patients in Maine please click here:
http://www.congenitalheart.me/

Web Resources

If you have recently been given the news that your baby will be born with a congenital heart defect there are number of websites and resources that can help you navigate the huge amount of information, facts, statistics and support related to CHD.

This website is a very useful one for those looking to gain information about a specific heart defect.  It has a number of useful diagrams, pictures and descriptions of the most common heart defects.  To learn more about their website click here: http://www.pted.org/

The March of Dimes is also a very helpful orgnaization that can give you information regarding CHD, testings, screenings, descriptions, surgeries, procedures and definitions.  To learn more about CHD on their website click here: http://www.marchofdimes.com/baby/congenital-heart-defects.aspx

A lot of major hospitals will provide detailed information about CHD on their website.  The Children’s Hospital of Philadelphia is one of those hospitals.  They provide updated, clear information about heart defects, surgeries, outcomes and research.  To visit their website click here: http://www.chop.edu/service/cardiac-center/heart-conditions/

The Center for Disease Control’s website gives great information regarding the latest studies, most updated research outcomes, facts, statistics, and resources regarding CHD.  You can visit their website here: http://www.cdc.gov/ncbddd/heartdefects/index.html

A great online website that aims to increase awareness for CHD and contribute funding to the latest research projects for CHD is the Children’s Heart Foundation.  You can visit there website here: http://www.childrensheartfoundation.org/about-chf

To learn more about CHD research and medical advances you can visit the National Heart, Lung and Blood Institute website.  Another research program and foundation is the Bench to Bassinet website.  Both of these organizations have goals to increase research, information and awareness for this number one birth defect.

http://www.nhlbi.nih.gov/about/index.htm

http://www.benchtobassinet.com/MyChildInStudy.asp

If you are an adult with a congenital heart defect you may want to look at the Adult Congenital Heart Association’s website:

http://www.achaheart.org/

Deciding to terminate a pregnancy due to a poor diagnosis for your baby can be a devastating one; there is no one who can understand how difficult it is to decide whether or not moving forward is in your or your family’s best interest.  This position can be extremely scary and isolating.  If you have decided to terminate your pregnancy due to a poor diagnosis here is an online resource program that may add some support to you.

www.aheartbreakingchoice.com/Default.aspx

Losing a child to CHD is life shattering; navigating the road of grief and loss is one that can be impossible to understand, and more impossible to endure at times.  If you need a support agency in Maine for those affected by grief and loss you can click the following website for the Center of Grieving Children:

http://www.cgcmaine.org/

If you would like to have online support regarding the loss of your child you may be interested in visiting the following website:

http://www.babylosscomfort.com/grief-resources/