Congenital Heart Defect Advocacy, Support and Awareness in Arkansas

Arkansas CHD Coalition is a network of Congenital Heart Defect patients (of all ages), their parents, families, and medical care providers here in Arkansas bonding together to help support each other; to support other organizations with similar goals; and to organize awareness and fundraising events for CHD causes. We provide a venue in which to connect and share our cause, information and suggestions across the state. We also strive to provide awareness and education regarding Congenital Heart Defects: the needs, the struggles, the joys, and the future. Please share this group with other ARKANSAS heart parents, survivors, or CHD related medical staff interested in sharing CHD awareness event info or organizing future events. 
 

Many of the members of our CHD support and awareness group had never heard of Congenital Heart Defects, commonly referred to by the acronym CHD, prior to the diagnosis of their child with a heart defect.  We have friends, tragically, who learned about CHD from a coroner’s report about their child. 

Basic Facts about Congenital Heart Defects (CHD)

Congenital Heart Defects are also sometimes referred to as Congenital Heart Disease. Congenital refers to a condition that is present at birth. Most of us commonly refer to these as birth defects.  There are over 35 known congenital heart defects, and many common combinations and variations of these defects.  In the US, a baby is born with a CHD every 15 minutes. More than 1 in 100 babies is born with a CHD. This year, in the US alone, almost 40,000 babies will be born with a congenital heart defect, approximately 4,000 of these babies will lose their fight with CHD.  CHDs are the #1 cause of birth defect related deaths. According to the March of Dimes, CHD is the most prevalent birth defect.  According to the Children’s Heart Foundation, CHD is the Number ONE cause of infant death. I believe this may have recently been surpassed by prematurity as the #1 cause of infant death, but congenital heart defects still takes from us more babies than all other birth defects, more than SIDS, and more than all childhood cancers combined.  Yet it is one of the least publicized and least funded medical causes involving children.

Diagnosis of CHD 

Although some CHDs are diagnosed in utero via ultrasound or fetal echo cardiogram, many CHDs are not diagnosed prior to birth, and many babies are sent home after birth with undiagnosed CHDs. Many states are adding a standard pulse oximetry test to the list of required and recommended tests prior to releasing newborns from the hospital.  This is a cheap, quick, non-invasive test; performed by merely wrapping a small sensor around an infant’s toe or foot and sensing the oxygen level in the circulating blood.  While a pulse oximetry test will help to detect a large percentage of previously undiagnosed CHDs, even pulse oximetry will not catch them all. Unfortunately, many CHDs remain undiagnosed until adolescence, and sometimes until adulthood (Think of the recent publicity regarding Sudden Cardiac Death occurences in several young athletes.) We are proud to say that Arkansas passed a “Pulse Oximetry/CCHD Screening” Law in April 2013, and we look forward to the full implementation of that law.

Curing CHD

There currently is no “cure” for CHDs.  Some CHDs can be managed and monitored without surgical repair.  Some CHDs require Multiple Open Heart Surgeries to create a “man-made” way for the heart to work and circulate blood.  Many CHDs require surgeries, monitoring and ongoing medical supervision and adaptation to keep the hearts functioning. Some CHDs will require heart transplants. There are treatments and palliative care, but THERE IS NO CURE.

Awareness, Research and Funding

So much more research is needed. Spreading awareness eventually leads to more research funding. From 1993 to 2003 death rates for congenital heart defects declined by 31% due to advances made through research! There is not yet a preventative answer for any type of congenital heart defect, and most heart defects have no known cause. Arkansas CHD Coalition supports facilities and causes who directly contribute to congenital heart defect medical care and congenital heart defect research.

3 comments on “Congenital Heart Defect Advocacy, Support and Awareness in Arkansas

  1. Loleta Snow on said:

    love love love it! Sent you my story to add :)

  2. Elizabeth Shipman on said:

    My middle son was born with a bi-cuspid valve and one of those simple test would have helped see his defect when he was born.

  3. Brittany on said:

    Think all the nurses at children’s hospital

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