Opinion: Having a child with complex medical needs is hard enough. Navigating the health care system makes it worse
Having a child with complex medical needs is hard enough. Navigating the health care system makes it worse.
Many families take for granted the ritual of taking a newborn baby home, car seat and curated swaddle blankets in tow, just a few days after delivery. But as critical care pediatricians, we care for babies and children who often don’t fit neatly into these universal experiences.
When our patients go home for the first time, they are rarely newborns. They can be as old as 2, having spent all their lives in the hospital after being born months early, or with devastating disease that has made them dependent on life-sustaining technologies. Alongside their custom car seats, our patients leave with tracheostomies, life-sustaining ventilators, oxygen tanks, suction machines, feeding tubes and pumps, and discharge instructions the size of a textbook — all necessary items to start their journey outside the hospital. Caregivers are given a crash course into medical guardianship, but their journey into the labyrinthine care coordination process is just starting.
What's Your Reaction?
