Coping and support

Caring for a baby with a serious heart problem, such as truncus arteriosus, can be challenging. Here are some strategies that may help make it easier:

• Seek support. Ask for help from family members and friends. Contact nonprofit organizations, such as the American Heart Association, Adult Congenital Heart Association or Mended Hearts for information about support groups in your area.

• Record your baby's health history. Write down your baby's diagnosis, medications, surgery and other procedures, the dates they were performed, your pediatric cardiologist's name and phone number, and other important information about your baby's care.

  It's also helpful to include a copy of the operative report from your child's surgeon in your records. This information will help you recall the care your child has received and be useful to doctors unfamiliar with your child who need to review his or her health history. It will also be helpful when your child moves from pediatric to adult health care.

• Talk about your concerns. You might worry about the risks of vigorous activity, even after your child has had corrective surgery. Talk with the cardiologist about which activities are safe for your child.

  If some activities are off-limits, encourage your child in other pursuits rather than focusing on what he or she can't do. If other issues about your child's health concern you, discuss them with your child's primary care doctor or pediatric cardiologist.