Coping and support

It can be challenging to live with hypoplastic left heart syndrome or to care for a baby with the condition. Here are some strategies that may help make it easier:

• Seek support. If you have a child with hypoplastic left heart syndrome, ask family members and friends for help. It's important for caregivers to take breaks. Talk with your child's cardiologist about support groups and other types of assistance.

  If you're a teen or an adult with hypoplastic left heart syndrome, ask your doctor if there are support groups for adults with congenital heart conditions. It can be helpful to talk to other people who share your challenges.

• Record your or your baby's health history. Write down your or your baby's diagnosis, medications, surgery and other procedures and the dates they were performed, as well as the name and phone number of your or your child's cardiologist, emergency contact numbers for your or your child's doctors and hospital, and other important information about your or your baby's care. Include a copy of the operative report from your or your child's surgeon in your records.

  This information will help you recall the care you or your child has received, and it will be useful for doctors who are unfamiliar with you or your baby to review the complex health history. This information is also helpful as your child grows into adulthood and transitions from pediatric to adult cardiology care.

• Talk about your concerns. As your child grows, talk with the cardiologist about which activities are best for your child. If some 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 cardiologist, too. As an adult, ask your doctor about what activities you can do, and about your concerns.