What are CHDs?

CHD stands for congenital heart defect or disease.  A CHD is a problem with your child’s heart that is found at birth or sometimes before birth.  There is more than one type of CHD and some are more serious than others.  Heart defects are the most common birth defect and affects nearly one in every 120 babies born.  Serious CHDs are often called critical congenital heart defects or critical CHDs, because they typically require procedures or surgery within the first year of a baby’s life.  About 1 in 400 births is affected by a critical CHD.

Click here for more information about some common congenital heart defects.

Treatments and Procedures for Children with a CHD

Your child may undergo different treatments or procedures depending on the type of heart defect he/she has and how severe it is.  Some of the most common treatments or procedures include catheterization techniques, open-heart surgery, heart transplant, medications.

Development of your Child with CHD

In general, children with a CHD function at age-appropriate levels; however, some children may be at higher risk for intellectual and language disabilities, attention disorders, or deficits in gross motor skills (your child’s ability to control different parts of his/her body).  This may include difficulties playing with certain toys, physical activity, or poor hand-eye coordination.  Behaviorally and emotionally, your child will act like other children his/her age.  Depending on the child, psychological and emotional issues related to their CHD can emerge, but this typically doesn’t occur until later in adolescence (click here for more information about CHDs in Adolescence) when your child may become more aware of his/her condition or faces certain challenges.

If you have any concerns about any aspect of your child’s development, consult your family doctor or child’s pediatrician for more information.  Your doctor may get you in touch with another specialist, such as an occupational or speech therapist, or psychologist to help with difficulties in motor skills or behavioral issues.

Parenting and Finding Support

Raising a child with a CHD can be a challenging process. Resources and support from the medical community and parent groups are available to assist families affected by CHD. Knowing what to expect can help your family gain an understanding of your child’s growth and development as well as prepare your family for dealing with the medical challenges and social and family issues, which may occur during childhood.

As your child continues to grow, you may find that each age and stage has its own unique challenges.  If you have other children, it’s also important to make sure that their feelings, uncertainties, and fears are adequately and appropriately addressed.  But, you don’t need to do it alone.  If you are experiencing troubles with stress, depression and/or anxiety, seek care from a mental health professional.  There is also a large support network of families in Utah who have a child or family member with a CHD that can relate.

Click here to see the support groups in Utah and around the country.

Looking to the Future

Children born with a congenital heart defect are living longer lives due to advances in knowledge, medical treatment and technology.  Current estimates from research indicate that approximately 2 million people are living with a CHD in the United States.  Children and adolescents with a CHD must visit their pediatric cardiologist on a regular basis to check for certain health problems, such as arrhythmias (irregular heart beat), or infections or weakness of the heart muscle.  As your child continues to grow into adolescence, it will be important to think about transitioning and transferring their care to an adult congenital heart specialist.  See the Adolescents and Adults sections for more information on transition of care.