Congenital Heart Defect Awareness

In May 2014, we were thrown into the world of congenital heart defects.  Stephen and I became “heart parents.”  Sam was labeled a “heart baby.”  I will forever be a heart mom.

When we were given Sam’s diagnosis when I was 21 weeks pregnant, I knew “congenital” meant a condition someone was born with, but I had no idea what any specific CHDs were.  I didn’t even know how a normally functioning heart worked.  When we first met with Dr. Kao, she started by explaining how a normally functioning heart works.  The American Heart Association has a well-detailed article {here} that explains how our hearts work. 

Hypoplastic Right Heart Syndrome

Sam was diagnosed with Hypoplastic Right Heart Syndrome, tricuspid valve atresia, two small atrial septal defects, a ventricular septal defect, and mild pulmonary stenosis.  Tricuspid atresia is one of the seven types of critical congenital heart defects, the most severe types.  I went into a lot of detail about Sam’s specific diagnoses in {this} post.  For more information about HRHS, tricuspid atresia, and pulmonary stenosis, see these sites: {tricuspid atresia at Boston Children's}, {tricuspid atresia at Johns Hopkins}, and the {American Heart Association}. 

HRHS is very different from but often confused with Hypoplastic Left Heart Syndrome because the names are so similar.

Congenital Heart Defects
  • One in 100 children are born with some form of CHDs making CHDs the most common birth defect
  • CHDs contribute to the deaths of twice as many children every year as all forms of pediatric cancer combined, yet funding for CHD research is roughly one-fifth of that for pediatric cancer
  • There are over forty different types of CHDs
  • Some CHDs go undiagnosed until adulthood and require no invasive intervention
  • About one in 100 children with CHDs require some form of invasive intervention, such as treatment during cardiac catheterization or surgery
  • Successful surgery and/or cardiac catheterization isn’t a cure; children and adults with CHDs will still require ongoing cardiac care for the remainder of their lives
  • Anyone can have a child with CHDs; CHDs don't prefer a certain race, ethnicity, or socioeconomic status.
  • CHDs can be diagnosed prenatally, but many are not.  I don’t have statistics, but I personally know many families who were not aware of their babies’ CHDs until they began presenting signs and symptoms after birth.
  • There is no known reason for the occurrence of most CHDs, but some are because of genetic abnormalities, the mother’s medical conditions, or environmental factors such as infection during pregnancy or taking certain medications during pregnancy
  • CHDs can affect parts of the body beyond the heart, like in Sam’s case

How do I know if my baby has CHDs?

Signs and symptoms of CHDs include:
  • lower than normal oxygen saturation
  • cyanosis (blue color around the lips and in nailbeds)
  • difficulty breathing, eating, and/or gaining weight
  • fatigue
  • abnormal heart murmur
  • poor pulse
  • sweating, especially while eating 

If it's not standard procedure where you delivery your baby to do a pulse oximetry test after your baby's birth, please ask for one.  It's a completely painless, non-invasive, and simple test that could help detect CHDs and save a life.

What can you do?

 This is what congenital heart defects look like:

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