The Importance of Patient Advocacy and Family Care

By Kerry Sheeran, author of The Marathon, a novel based on the true, emotional journey of a mother and father forced to face their daughter’s life-threatening medical crisis.  Having held my daughter Emma’s hand through eight major surgeries, I consider myself well-versed in what it means to be a patient advocate. All parents are advocates for their children to a degree. From trying to feed them the right foods to connecting with their teachers, helping kids find their way in the world requires a lot of guidance and support from mom and dad. But when your child has a medical crisis, advocacy takes on a whole new meaning. You become the “voice” of the sick child, speaking for them, through your own lips. Patient advocacy isn’t something that’s necessarily innate—it’s a skill that is developed over time. My husband and I learned this first-hand (with the help of a handful of Neonatal Intensive Care Unit (NICU) nurses at Boston Children’s Hospital.) An uncertain beginning Before Emma was born, we received a lot of conflicting information from various doctors. My original OB-GYN was dangerously nonchalant with regards to a couple of red flags that had popped up on my ultrasounds. My subconscious was insisting I get to the bottom of whatever was going on with my unborn baby. I found myself constantly thinking: This is my child, my job.  My responsibility. A second opinion suggested Emma might be born with Down syndrome. A third opinion dismisse...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: All posts our patients' stories patient advocacy Source Type: news