CHD Information

Links:
CHD 101 via 1in100.org
For detailed information on specific CHDs, surgeries, and medications for CHD, visit CHD Babies.
For information on research, click HERE.
Symptoms:
By Mayo Clinic

Serious congenital heart defects usually become evident during the first few hours, days, weeks and months of life. Signs and symptoms could include:
  • Loss of healthy skin color
  • Pale gray or blue skin color (cyanosis)
  • Rapid breathing
  • Swelling in the legs, abdomen or areas around the eyes
  • Shortness of breath during feedings, leading to poor weight gain

Less-serious congenital heart defects are often not diagnosed until later in childhood. Your child may not have any noticeable signs or symptoms. If signs and symptoms are evident in older children, they may include:
  • Easily becoming short of breath during exercise or activity
  • Easily tiring during exercise or activity
  • Built-up fluid in the heart or lungs
  • Swelling in the hands, ankles or feet

When to see a doctor
Serious congenital heart defects are often diagnosed before or soon after your child is born. If you notice that your baby has any of the symptoms above, call your child's doctor.

If your child has any of the symptoms of less-serious heart defects as he or she grows, call your child's doctor. Your child's doctor can let you know if your child's symptoms are due to a heart defect or another medical condition.

For diagnosis information, click HERE. 
Pulse Ox Information:
  • Pulse ox testing costs less than a diaper change.
  • The equipment is already in place at all hospitals.
  • It is non-invasive.
  • Up to 30 percent of the babies with CCHD might be leaving the nursery undiagnosed.
  • On September 17, 2010, the Secretary's Advisory Committee for Heritable Disorders in Newborns and     Children (SACHDNC) agreed to recommend the addition of screening for Critical Cyanotic Congenital Heart Disease to the core panel for universal screening.
  • Pulse ox testing does not harm the baby or interrupt bonding time because the mother can stay with the baby
  • Two years of newborn screening for heart defects at a single hospital (7000 babies) showed 1.4% of babies failed their pulse ox evaluations, 26 babies had CHD, 75 PDA/PFO. Only 2 had false positive results.
For more information on Pulse Ox Newborn Screening, click HERE.
For more information on what you can do to help make Pulse Ox Newborn Screening standard, click HERE.
CHD Facts:
  • 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