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Congenital Heart Disease Patient Guide

About 96 percent of children born with some type of congenital heart disease will live full and active lives well into adulthood. The Cedars-Sinai Congenital Heart Disease Program is making a difference in the lives of these children and adults with congenital heart disease, providing them continuity of care unparalleled at any other institution.

It is important for patients to plan for their long-term care and choose a team that can care for their heart disease for their lifetime—from before birth to their elder years.

Children Living With a Congenital Heart Defect

Living with congenital heart disease—disease that is present at birth—requires special care for your child. This information is provided as a brief overview of 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 congenital heart disease often grow and develop more slowly than other children. Your child may look younger or thinner than other children their age. They may fall into a lower percentile category at pediatrician visits, and they may be slower to reach developmental milestones than healthy children (rolling over, sitting, walking, etc.)

These issues can impact growth and development and should be a high priority 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 congenital heart disease can 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 participate in your healthcare team’s plan of care, and will work with parents on exercises that can be used at home to strengthen your child.

Adults Living With a Congenital Heart Defect

Most of the time, congenital heart defects are diagnosed and treated during childhood, but at least 10 percent of patients will have a diagnosis that isn’t made until adulthood. There are over 1 million adults living with congenital heart disease in the United States, with the adult population expected to grow by 5 percent a year. As a result of continued improvements in the medical and surgical care of patients with congenital heart defects, there is an increased lifespan for the patients that once may have had a limiting life.

It’s important for patient with congenital heart defects to routinely (yearly, at least) meet with their physician who specializes in the care and long-term management of such patients, keeping in mind that a cardiologist with additional subspecialty training in congenital heart disease is the best partner for managing their lifelong condition.

The healthcare team in the Cedars-Sinai Congenital Heart Program will work with patients on a variety of quality of life issues, such as:

  • Living a productive life
  • Activity and exercise to promote a heart healthy lifestyle
  • Nutrition and diet
  • Family planning and reproduction