Overview of Congenital Heart Defects

Knowing about congenital heart defects just might save a life, your child's, your friends, or yours. Congenital heart defects are the most common of all birth defects, yet most people have never heard of them. They occur in about 1 in 100 babies born in the the United States and the defects are seen in much higher numbers in other countries.

Recently, prematurity passed CHD as the number one killer of babies, but CHD still kills more babies than SIDS and all other birth defects. About 4000 babies a year lose their battle to CHD, some of them are undetected until after death. Each year in the United States, about 40,000 babies are born with CHD.

Detecting CHD is a puzzle because no test screens successfully for CHD all the time, but several can help. Sometimes the mother's doctor or midwife will notice an irregular heart beat and suggest further testing. Other times, the heart defect is noticed at an ultrasound, most often the ultrasound conducted around 20 weeks gestation. Further testing in utero might include a fetal echo. Doctors and families prepare for the arrival of the child and the child might face surgery after birth for the most severe defects.

Other times, the defect is found shortly after birth. The baby might present signs of a problem like turning blue, looking dusky, or breathing "funny." A doctor or nurse might also suspect a problem after hearing an irregular murmur.

And sometimes the defect is found thanks to pulse oximetry screening. This type of screening isn't currently done on all babies at every hospital and doesn't catch every CHD, but is simple and non invasive and will soon be routine.

Other heart defects are detected by physicals and examinations later in life. Congenital heart defects can go undetected into adulthood. Many of the tragic stories of athletes that die on the field or in practice are because of an undetected CHD.

The range of heart defects is wide from a small hole in the heart that requires no treatment to serious defects that mean a heart transplant is needed for any change of survival.

While many of the people living with CHDs today are children, more of them are adults thanks to medical advances. Over a million adults today currently have a defect in the United States alone. These adults face a battle to get proper medical care because experts are limited. Patients often travel far to seek treatment.

While many diseases need more funding, research, and attention, CHD research is grossly underfunded. 

Groups are working to change that advocating for more research, and better tracking of the lifespan of a CHD patient's medical treatement.