Newsletter Signup Contact Donate

Courageous Parents Network

About

Initiatives

Contact Donate Newsletter Signup

Search entire library or by microsite

Media Library

Navigating Medical Complexity Coping With Loss Neurojourney

Search

Search entire library or by microsite

Media Library Navigating Medical Complexity Coping With Loss

Click here for NeuroJourney resources

Home > Nicu > Themes

SHARE

Videos

Theme: NICU

NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”

Page: 2 of 3

NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”

NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”

The mother and father of a son born with a very rare genetic condition talk about how frustrating it was to be thrown into the medical system as the “hub of information” for their son’s treatment as different medical specialists only provided small nuggets of guidance without any sense of unified care.

SHARE

19 / 32

Related Resources

Event
Being My Child's Protector, Advocate, and Decision-Maker in the NICU
Post
A Letter to Myself, One Year Ago
Post
Finding HOME in the NICU and the Heart
Post
Not Home