Emma: raised in a care facility
Submitted by Carol Lindsay
Tags: child Health Care Reform Hospital for Sick Children
Submitted by Carol Lindsay. Re-published with permission from her Medium.com account
Two-month-old Emma had colic. She cried — a lot! Tired of the crying, her dad stuffed her in a duffle bag. Emma cried louder. Dad zipped the bag shut, muting the crying but not stopping it. Dad picked up the duffle bag and slammed it repeatedly on the coffee table. Emma quit crying.
Emma spent 3 months in a children’s hospital. They put a shunt in her brain, a tracheostomy in her throat, and a feeding tube in her stomach. Because of the tracheostomy, Emma can’t cry.
At 5 months old, during COVID-19, she was discharged from the hospital in the custody of Family Services and placed in a long-term care facility. The facility was locked down. Emma’s world consisted of her room, the staff, and an occasional visit from a DCFS worker.
Her tracheostomy is suctioned, and her seizures are treated; every heartbeat and breath is displayed on monitors at the nurse’s station. Her body is cared for, but no one rocks Emma, holds, sings, or reads to her. She is tube-fed; there is no need for someone to make eye contact with her as they give her a bottle. The nurses have many patients; Emma gets attention when the alarms and monitors say she needs it.
I was assigned as Emma’s Court-Appointed Special Advocate through the Department of Family Services when she was 4. My first observation was, “What a beautiful little girl!” My second was that the back of her head was flat like a board. For five years, her world has consisted of a room on a pediatric floor in a long-term care facility.
On my first visit, I asked the nurse, “Does she like to color, read books, or sing?” The nurse responded, “I don’t know, we don’t have time for any of that.” I asked if she could roll over or stand, and the nurse responded, “I don’t think so.” “What does she like,” I asked, “to be touched,” the nurse said.
Emma spends her day at the facility lying in her crib or sitting in a wheelchair in the hall at the nurse’s station. She lives in the facility; if she gets sick, she doesn’t go to the doctor, and the doctor visits her. The respiratory therapist increases her ventilation when she gets a respiratory illness. When she has a seizure, the nurses give her medication. There is no reason for her to leave.
Emma’s only game is throwing toys on the floor and waiting for staff to pick them up. Over and over, she throws toys from her wheelchair. With no time to pick up toys, the staff tethered them to her chair. It’s not a game when you play alone.
The staff is kind; Emma is clean, suctioned, tube-fed, and has her ventilator monitored. Yet, her development didn’t happen as it should — no one encouraged her to try new things, crawl, stand, or engage. The absence of connection caused emotional stunting. How can a child grow emotionally if no one is there to encourage a smile, respond to babbling, or engage in a simple game of peekaboo?
I take Emma into the day room to play on the floor — a change from her wheelchair and crib. Playing consists of throwing and tapping toys. I put my Granddaughter’s favorite show, Ms. Rachel, on my phone. Emma is a fan.
I sing the “Bubble, Bubble Pop Fish” song with Ms. Rachel, and Emma makes hand motions. The song lyrics, “Can you say Mama, Mama? Can You Say Mama’s Name?” Emma is smiling and trying to say Mama. Sweet, I think, then the lyrics hit me; I am overwhelmed with sorrow for this little girl with no mama or dada. After singing “Wheels on a Bus.” Ms. Rachel asked, “How do you go to the grocery store? Do you take a bus?” More sorrow comes from realizing Emma has never been to a grocery store. Since the night she left her home in an ambulance, Emma’s never been anywhere but the hospital and the long-term care facility.
Even though she can sit up and is strong, Emma doesn’t try to crawl or stand; no one encourages her to try new things. When staff walk by, they pat her on the head or say hello, but there is no meaningful connection. These institutionalized behaviors feel like it’s the 1970s — learned helplessness.
Our healthcare system is failing the most vulnerable members of society. While her physical needs have been met, her emotional and developmental needs have not. This is not just an issue for children like Emma but for the 1.5 million disabled and older adults who live in long-term care. Our current system is not enough. We need to create a system of care that values the whole person — their body, mind, and heart.
It’s time to fight for those in long-term care. How do we create a world where every child and adult has access to care that allows them to grow, connect, and thrive regardless of their condition?