For most people, the trajectory is clear: When you are a kid and you’re sick, you go to the pediatrician. If you have a chronic medical condition, as in my case, you establish a team of pediatric specialists who can provide for your health issues on a consistent basis throughout your childhood. As you get older, you work with these specialists to transition your care to a new team of doctors who are better suited for treating adults.
For me, however, this hasn’t been the path. I am 30 years old, and I am still an active patient at Lucile Packard Children’s Hospital Stanford. My conditions are so complex that they require the care of specialists who have been with me since early childhood. Beyond my medical care, these specialists have been committed to me in a bigger way: They have become my family, which is something I truly did not have until I found myself in the hospital.
Childhood: Overcoming neglect and finding my voice
Born 3 months premature to a heroin-addicted mother, I was diagnosed with spina bifida and cloacal exstrophy, a rare birth defect of the abdominal wall in which the organs are outside of the body. These conditions come with a host of related medical complexities, which led to frequent, unplanned hospitalizations throughout my childhood.
My mom spent much of my early years in and out of prison, where she passed away when I was just 5 years old due to health issues from her years of drug abuse. After her death, I was permanently placed in foster care, and this was the beginning of a long, painful chapter of my life. I spent 14 difficult years in the system. During this time, I was deprived of the medical care that I needed at home, and I was exposed to gangs, homelessness, drugs, alcohol and neglect, including extremely unsanitary living conditions.
As a result, I developed frequent infections that often required hospitalization. Over the years, I have had more surgeries than I can count to maintain function in my bowels, bladder, spine, pelvis and hips. For my frequent inpatient stays, my foster mom would check me in to the hospital and then leave. I’d hear other families talking and laughing and soothing their children in the neighboring rooms as I sat alone, with only the sounds of the beeping and whirling of the machines for company. This experience taught me to advocate for myself and to ask questions so I could be part of the decisions for my own care.
Adolescent years: Growing up at Packard Children’s
My nurses and doctors were impressed by my precocity and concerned about my lack of parental support, so they went above and beyond and gave me what felt like a family. They were some of the first adults in the world who respected my voice and made me feel safe, welcome and deserving of a good chance in life.
One nursing assistant in particular, Petie Cote, now retired, would visit with me for hours after her shifts ended. She would bring me my favorite snacks and take me on walks around the hospital. Today, Petie remains a huge part of my life. She and her late husband gave me away at my wedding in 2006, and I even call her “Mom.”
I also have Packard “grandparents.” I met Grandpa Dave Olsen when, as a volunteer, he came to read stories to me, something he dedicated himself to after losing his own grandson to cancer. I explained to him that I was alone, and he assured me, “I’ll be your grandpa.” He kept true to his promise, and in the years that followed we stayed close, sharing holidays and life’s milestones.
Adult years: Pursuing my dreams
As I got older, I expected to phase out of the children’s hospital. When I was in my 20s and married, I started to see adult specialists. But I always came back to William Kennedy, MD [a professor of urology] and his team at Packard Children’s. They knew my story and my medical history, and they were able to treat my congenital complexities, which adult specialists have struggled to navigate. Also, I’ve always felt this was a place where my voice was respected, no matter how big my dreams became as I thought about my future outside the hospital walls.
Thanks to the care and encouragement I received at Packard Children’s, I was inspired to pursue my dream of becoming a nurse. When administrators reviewed my application and doubted whether I was physically capable of such a demanding job, my doctors convinced them otherwise. “She can walk, talk, think and do everything like the rest of the applicants can. She just may have to go to the bathroom more often than some of your other students,” Kennedy told the schools.
It paid off. Today I am a licensed vocational nurse at the VA Palo Alto Health Care System where I work in the Medical Specialty clinics, caring for patients in the cardiology, urology and neurology units. I also work in Blind Rehabilitation Services with veterans who have lost their vision due to disease or blast injuries, and I am pursuing my master’s degree in public health at San Jose State University.
I’ve paved the way for myself, and I hope that through my work as a nurse I will be able to pay forward the extraordinary care I’ve experienced throughout my life. I’ve always said, “you can’t always control what you are given in life, but you can control what you do with it.” I’m striving for that every day.
- Misty Blue Foster
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