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Parenting a Child with Pulmonary Hypertension

Having a child with pulmonary hypertension (PH) presents some unique challenges. This e-learning guide is filled with helpful information and resources to ensure that your child receives the best care possible.

Tips to Consider

Parent and Child

  • Know that your child’s PH is not your fault. Give yourself permission to feel angry, sad, afraid, confused, or whatever you need to feel, but try not to dwell on “what ifs” and “if onlys.”
  • Take care of yourself. Data from limited studies suggest that better parental quality of life can directly enhance the quality of life of children with PH.
  • Ask for and accept help. Parents often want to do everything for a sick child, but demands can be so profound that it’s crucial that you allow others to help from time to time.
  • Reach out for support. Connecting with other families who have been living with PH for a long time can be a valuable source of information, support and strength.
  • Establish routines. Get in a routine at home to cut back on stress around the house. Having set times for cleaning, cooking and family time can cut back on indecision, disorder and parental guilt.
  • Get organized. Get a detailed calendar or organizer to keep track of appointments, scheduled events, and changes to “normal” school or other activities to cut back on stress.
  • Try new things. New, shared activities can bring families together and give the child with PH a new focus post-diagnosis. Creative activities, such as arts and crafts or music lessons, can build self-esteem and nurture life-long family interests.

Give it a Listen …

PH Research: A Pediatric Perspective   Get the Best Care Possible for Your Child

Learn about the current PH medications used to treat children and novel therapies that may be studied in children. This webinar will help you stay up-to-date on results of recent pediatric studies.

 

Learn how to get the most out of time-limited medical appointments with strategies for communicating effectively with medical professionals.

View more PHA Classroom parent recordings

Looking for more information? View additional PHA resources on parenting

 

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.