Topics on This Website

This website includes six topics that parents often find useful to think about.

You may choose to view the entire website now, or start with the topics that interest you the most, and return to hear the rest when you are ready. After the last family’s story, we offer tips and questions for talking with your child’s medical team about the information in the website.


Topic 1: Considering the Options

  • 1A - Trach and Vent option for your child
  • 1B - Other options for your child

Topic 2: Talking with your Doctors

  • 2A - Getting clear information about the options
  • 2B - Expressing your preferences and concerns

Topic 3: Life at Home

  • 3A - New routines and challenges at home
  • 3B - Balancing work, time, and money

Topic 4: Relationships

  • 4A - Relationship changes and challenges
  • 4B - Extended family and other support

Topic 5: Your Child's Experience

  • 5A - Quality of life
  • 5B - Life with a breathing machine

Topic 6: If Your Child's Life is Short

  • 6A - Focusing on what is most important
  • 6B - Preparing for the end of life