Congenital Heart Defects (CHD) are the number one birth defect in the United States. They include structural defects, congenital arrythmias and cardiomyopathies. Congenital Heart Defects is a defect of the heart that exists primarily at birth, and can describe a wide variety of different abnormalities affecting the heart. Congenital Heart Defects occurs when the heart or blood vessels near the heart does not develop properly before birth. Therefore, the heart does not pump because it is not completely developed. Also the blood flow is obstructed in the heart of the vessels nearby, causing an abnormal flow of blood through the heart. Blood flow obstructions put a strain on the heart muscle causing the heart to work harder and beat faster. Abnormal blood flow usually occurs when there is a hole in the walls of the heart and may be an abnormal connection between two arteries outside the heart.
- Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
- Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
- About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
- Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
- The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
- This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
- The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
- Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
- Though research is ongoing, at least 35 defects have now been identified.
- 4-8% born with CHD have Hypoplastic Left Heart Syndrome
- 4-10% born with CHD have Atrioventricular Septal Defects
- 8-11% born with CHD have Coarctation of the Aorta
- 9-14% born with CHD have Tetralogy of Fallot
- 10-11% born with CHD have Transposition of the Great Arteries
- 14-16% born with CHD have Ventricular Septal Defects
- Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
- It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes
How do you know if your baby is one of the 1 in 100?
- Some CHDs are picked up in utero by a regular ultrasound.
- Others can be picked up by a Level II ultrasound.
- Some say a fetal echocardiogram should be conducted on every mother and child to test baby hearts.
- Others want an echocardiogram, test that uses sound waves to get a picture of the heart, for every newborn.
- Right now, Olivia and I lobby for a pulse oximetry test on every baby. This test is cheap, quick, non-invasive and should be standard in newborn screening. A couple of groups are working on making this test standard. In Indiana, Kristine from www.corasstory.org is working for Cora's Law, making pulse ox mandatory before discharge.
- Some CHDs can't be detected by known methods. So much more research is needed. Spreading awareness leads to more research funding.
What can you do?
- Until pulse oximetry tests are standard. You can tell mothers and fathers to ask their doctor to run a pulse ox on their newborn between 24 to 48 hours of age.
- Spread the word. Awareness means more support for much needed research funding. Awareness means less mothers and fathers will find out about CHD from the coroner.