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Family Reflections

Deciding about Home Ventilation

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Preparing for the end of life

If My Child’s Life Is ShortTopic 6B

Preparing for the end of life

Nothing can fully prepare a parent for the death of a child. Talking about fears, goals, and beliefs may help you and your family during this difficult time.

You can listen to two different family experiences below.

Catherine

Catherine up late at night reviewing bills and finding online support groups. Nurse caring for Vivian who is connected to a breathing machine.

“I know that one day, a virus might overwhelm her body’s ability…”

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Catherine: I know that one day, a virus might overwhelm her body’s ability to protect her. Or her heart will get worse, and she will start to struggle. We’ll do whatever we can to give her the best life possible until that point, until she can no longer stay at home with us.

My husband Ken and I agree that, when we get to that point, we should stop using the trach and vent as tools to keep her alive. I can’t imagine how hard it will be to let my Vivian go, but I’ve realized that saving a life is not the same thing as saving a child. I don’t want to just keep Vivian’s body alive, if her spirit is already gone. Removing the vent then would not be giving up; it would be giving her peace, rest and comfort.

Moms like me are sensitive about the term “quality of life” — because it means something different to us. I think Vivian has a good quality of life to the extent she can. Is it good compared to a child without medical problems? Of course not, but the vent has allowed us to love her longer than we could have otherwise.

Morgan & Matt

Photo of Matt and Morgan with Ashley in bed.

“I had no idea how to plan for our time with our daughter…”

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Matt: I had no idea how to plan for our time with our daughter. When you think of having kids, you start planning where they will go to school, when they’ll learn to ride a bike, if they will want a dog. You never think they won’t live to be old enough to do any of those things. We didn’t know if Ashley was going to be with us for minutes or hours or a week after she was born. I’d never seen anyone die before, not in real life, just in movies and TV. I couldn’t imagine what it would be like.

Morgan: The hospice people were great. Their nurses and social worker and chaplain—they brought up really difficult discussions that we were probably too afraid to bring up ourselves. They described how it would be when Ashley died. What she would look like. What we could do to help her breathing be more comfortable. Who could be here. When our pastor should come. What would happen after.

Matt: They had medicines in case Ashley became uncomfortable. They knew that our families would want to be here too, our parents, my sisters. The hospice nurses talked to them about all this too, so we didn’t have to. It was a huge help.

Morgan: When Ashley’s breathing got harder, I was scared. I asked the hospice to try the oxygen to see if it would help. But it really didn’t, and it just made it harder to hold her and kiss her, so we stopped and took it off again. The medicines the hospice gave her did help. What seemed to make Ashley most comfortable was to snuggle in bed with me and Matt and our dog. My mom would sit in the corner and sing or my sister would read aloud. It was the hardest thing we have ever done, but we were not alone. So many people helped us.

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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.