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Media Library Navigating Medical Complexity Coping With Loss

Click here for NeuroJourney resources

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Search entire library or by microsite

Media Library Navigating Medical Complexity Coping With Loss

Click here for NeuroJourney resources

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Hear from and learn from fellow parents and clinicians in videos, guides and blog posts.

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Families need help navigating this health care system.

Families need help navigating this health care system.

Good adequate care should encompass what happens once the children come home from the hospital.

Good adequate care should encompass what happens once the children come home from the hospital.

A Mom: The focus is on the baby, but what about strengthening the mom and the dad? … Families need to feel empowered to ask for what they need.

A Mom: The focus is on the baby, but what about strengthening the mom and the dad? … Families need to feel...

The death of a child and a husband, and now solo parenting: “I’ve learned to live life with grief.”

The death of a child and a husband, and now solo parenting: “I’ve learned to live life with grief.”

Decision-making in the NICU: When the mom and dad are thinking at different scales of time

Decision-making in the NICU: When the mom and dad are thinking at different scales of time

The best advice I got as a NICU Mom: Push aside all the predictions, love him and give him the necessary tools. But that’s a lot of work.

The best advice I got as a NICU Mom: Push aside all the predictions, love him and give him the necessary too...

A mother to clinicians: “You have to be mindful of your words. Always leave a little room for hope.” And to parents: There is always light.”

A mother to clinicians: “You have to be mindful of your words. Always leave a little room for hope.” And...

“We were not ready for her actual diagnosis.”

“We were not ready for her actual diagnosis.”

“To have the fortitude to push the medical team, from whom you are looking for an honest answer, was so frustrating.”

“To have the fortitude to push the medical team, from whom you are looking for an honest answer, was so f...

Wondering if your child is going to be the exception. “There are always those cases.”

Wondering if your child is going to be the exception. “There are always those cases.”

A mother on the agonizing decision to transition to Hospice Care: “It felt like nobody talks about it.”

A mother on the agonizing decision to transition to Hospice Care: “It felt like nobody talks about it.”

“I really appreciated the child-life specialist who guided us [through end-of-life for our older son.]”

“I really appreciated the child-life specialist who guided us [through end-of-life for our older son.]”