Living with congenital (present at birth) heart disease requires special care for your child. This information is provided as a brief overview to things you should consider for your child but keep in mind that your healthcare team will work with you and your family to tackle each of these areas as they become a concern for you.
Children with CHD often grow and develop more slowly than other children. Your child may look younger or thinner than other children their age. He or she may fall into a lower “percentile” category at pediatrician visits and they may be slower to reach developmental milestones than healthy children (i.e. rolling over, sitting, walking, etc.)
These issues can impact growth and development and should be a high priority focus for your family. Hearts that pump inefficiently must also pump more rapidly to meet the body’s demand. The body’s metabolism is faster under these conditions so extra, high-quality calories need to be consumed in order to maintain weight and growth. Your child may also tire easily since their body is working harder under the stress of a heart defect. Infants may tire easily during a feeding or even sleep through it and older children may not have enough energy to eat properly. Your healthcare team will provide you with a plan to address these concerns.
Parents of children with CHD can actively promote the development of their child by providing reassurance through touch and talk, especially during times of stress; encourage your child to participate in light physical activity as directed by your child’s physician; provide toys that stimulate your child’s senses (hearing, vision, touch, smell). The specialists in our Child Life Services area will work with you and your child on sensory integration and tips for using play as a therapy tool that will help your child emotionally. The physical and occupational therapy team at Cedars-Sinai will also actively participate in your healthcare team’s plan of care and they will work with parents on exercises that can be used at home to strengthen your child.