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Family Reflections

Deciding about Home Ventilation

  • Home
  • Topics
    • 1: Considering the Options
    • 2: Talking with your Doctors
    • 3: Life at Home
    • 4: Relationships
    • 5: Your Child’s Experience
    • 6: If Your Child’s Life is Short
    • How can you apply this to your child?
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Topics on This Website

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

Start with Topic #1 ➜

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Text and Audio © 2019 Johns Hopkins University

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BiPAP

Bilevel Positive Airway Pressure: A machine that helps a person breathe by pushing air, and sometimes oxygen, through a mask. Straps keep the mask in place on the face.

Palliative Care

Palliative care aims to reduce a child’s pain or discomfort. Palliative care also helps families consider what is most important to them. Palliative care specialists provide an extra layer of support for children with serious illness and their families.

More about Chayton...

Chayton is 6 years old and uses a feeding tube and wheelchair because of muscle weakness. His parents did not want him to go through the surgery for a trach. He has been able to use BiPAP to help him breathe at home with his Mom, Dad, and older brothers.

More about Chayton...

Chayton is 6 years old and uses a feeding tube and wheelchair because of muscle weakness. His parents did not want him to go through the surgery for a trach. He has been able to use BiPAP to help him breathe at home with his Mom, Dad, and older brothers.

More about Vivian...

Vivian is 4 years old, and had heart surgery as a baby. Then she got pneumonia when she was 2 years old, and couldn’t leave the hospital without a trach and ventilator. Her Mom and Dad wanted her home, and learned to take care of her home vent.

More about Vivian...

Vivian is 4 years old, and had heart surgery as a baby. Then she got pneumonia when she was 2 years old, and couldn’t leave the hospital without a trach and ventilator. Her Mom and Dad wanted her home, and learned to take care of her home vent.

More about Ashley...

Ashley’s parents knew before she was born that she would have many serious health problems, including trouble breathing. Morgan and Matt were given options by their medical team. They knew Ashley’s life would be short, even with a ventilator. They chose to take her home with hospice care. Ashley died at home with her family when she was 3 months old.

More about Ashley...

Ashley’s parents knew before she was born that she would have many serious health problems, including trouble breathing. Morgan and Matt were given options by their medical team. They knew Ashley’s life would be short, even with a ventilator. They chose to take her home with hospice care. Ashley died at home with her family when she was 3 months old.

More about Devin...

Devin is 8 years old and has cerebral palsy and scoliosis. He uses a wheelchair and a feeding tube. When he started to have trouble breathing, not everyone agreed about doing the trach and home ventilator. But his mom believed it was the best thing for Devin. Her aunt helps her care for him at home.

More about Devin...

Devin is 8 years old and has cerebral palsy and scoliosis. He uses a wheelchair and a feeding tube. When he started to have trouble breathing, not everyone agreed about doing the trach and home ventilator. But his mom believed it was the best thing for Devin. Her aunt helps her care for him at home.

More about Ruby...

Ruby was born prematurely and her lungs didn’t fully develop. After being sick for months in the hospital, her parents decided that a home ventilator was not right for Ruby and would not work for their family. She was removed from the hospital ventilator and she died in her father’s arms.

More about Miguel...

Miguel was born prematurely with very fragile lungs. When he was 6 months old his parents chose to for him to have a trach and home vent so he could leave the hospital sooner. He is 9 months old now, and lives with his Mom, Dad, and very active older brother.

More about Miguel...

Miguel was born prematurely with very fragile lungs. When he was 6 months old his parents chose to for him to have a trach and home vent so he could leave the hospital sooner. He is 9 months old now, and lives with his Mom, Dad, and very active older brother.

More about Ruby...

Ruby was born prematurely and her lungs didn’t fully develop. After being sick for months in the hospital, her parents decided that a home ventilator was not right for Ruby and would not work for their family. She was removed from the hospital ventilator and she died in her father’s arms.

Ventilator (or "Vent")

A machine that helps a person breathe by pushing air, and sometimes oxygen, through a tube in the throat. This is sometimes called a “breathing machine.”

Tracheostomy (or "Trach")

A tube that goes through the throat and into the airway. A ventilator can be hooked up to a tracheostomy.