Analysis: Doctors Told Me My Son Would Be Better Cared for in an Institution. They Were Wrong

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Children belong at home with their families. For children with complex medical needs, this is
still true.

I know, because my son was institutionalized in a pediatric subacute facility for most of the first
year of his life. When he was only a few weeks old, he had surgery to place a tracheostomy
tube for breathing and a gastrostomy tube for feeding due to a complex craniofacial syndrome.
Care of a child with a tracheostomy, especially a tiny infant, requires constant supervision and
intervention to keep the breathing tube open and in place. I remember being told that the
mortality rate for children with tracheostomy tubes in the first year of life was so high that the
hospital had to send them to a facility for transitional care. It was presented as a place where
both his medical needs and his developmental needs would be met, because it was supposed to
be more homelike than the hospital.

At the time this was happening, I didn’t know what care at home could look like for a child with
complex medical care needs. I didn’t even know it was an option. My husband and I were
making decisions based on the information that was presented to us. I wasn’t an advocate. I
didn’t know the history of disability rights and the fight for disabled people to receive care in
their own homes, not nursing homes. I was just a mom, convincing myself that I had made the
right choice of how to take care of my son in a situation where I didn’t actually have any good
options. On the one hand, the facility felt less alien than the NICU. On the other hand, it didn’t
feel like home either — it felt like a clean and well-run orphanage.

Institutionalization refers to care that is provided in a location other than home. The location
can be the rehabilitation wing of an acute care hospital, a pediatric subacute facility, like where my son lived, or a specialized home for children with developmental disabilities or medical
needs. In some situations, children with medically complex disabilities spend months in the
Intensive Care Unit, the most expensive and least developmentally appropriate place for kids.
Institutionalization is orders of magnitude more expensive than home care and
developmentally harmful for children. It also disrupts the lives of parents and siblings.

When my son was born, we lived in a small rural town in Fresno County. The closest facility that
met my son’s medical needs was 170 miles away in the Bay Area. California only has 10
pediatric subacute facilities, two in the Bay Area and eight in Southern California. During this
time, as a mother, my heart was broken no matter where I was, because whether I was at
home or at the hospital, something was always missing. Our family eventually settled into a
routine. I would drive up and stay in the Bay Area Tuesday through Thursday in order to be at
the facility with my son, and my husband would take our daughter to daycare. Friday through
Sunday we would bring our daughter to the facility. As a toddler, she quickly learned that she
was allowed to mute her brother’s pulse oximeter but not any of the other children’s machines.

When I couldn’t be at the facility, my son spent most of the day alone in his crib. If he had been
at home, I could have picked him up when he cried. Picking up a crying infant is a basic human
instinct because being held is a basic human need. In the facility, if I wasn’t there, he would cry
alone in his crib. He would cry until he spit up whatever formula was in his stomach, then
stomach acid, then intestinal bile. This eventually spiraled into total oral aversion — he vomited
so much and so often that he rejected oral feeding and a pacifier, anything that touched his
mouth or lips would trigger a gag reflex. This also worsened the problem of not being picked up
— when the staff did have time to pick up one of the babies, they tended to avoid the one who
was constantly vomiting and leaking stomach acid.

The root cause of the problem was that his basic human and developmental needs weren’t
being met. That problem couldn’t be solved as long as he lived in the facility. Instead, doctors
changed the way he was fed, using a system that drained his stomach to keep it empty and delivered formula directly to his small intestines at all times. With that system, he could cry and
gag constantly but still gain weight because there wasn’t anything in his stomach to throw up.
That was the kind of solution that institutional care could provide.

In order to bring our son home from the subacute, my husband and I had to demonstrate
competence in the medical parts of his care. That part was difficult by any objective measure,
but was easy compared to the second requirement. The facility also required us to find home
nursing coverage — their initial requirement was that we have 16 hours a day of coverage,
including overnight coverage, seven days a week. That requirement was insurmountable, but I
spun my wheels for months trying to meet their demand. To bring him home it was my job to
find home nurses, a supplier for his breathing machines, a pharmacy that could fill compounded
and specialty prescriptions, and figure out all of his insurance and Medi-Cal paperwork.
Institutional care provided all those things automatically, home care required me to be the
ringmaster of the whole circus.

The facility eventually agreed to release him to home care on the condition that we find a day-
shift nurse and agree to sleep in shifts for the rest of our lives. One of the most common and
tragic ways that children with tracheostomies die is that an emergency happens overnight, and
the exhausted parent sleeps through the alarms and doesn’t wake up in time to resolve the
problem. I can still hear the doctor’s stern intonation when she told us, “You can never fall
asleep.” She was solving the problem that she perceived — kids die when their parents fall
asleep. But the solution she was providing put the blame and responsibility on the people with
the least amount of power in the situation. The assumption was that the system of home care
wasn’t going to be functional, and the solution was for parents to simply never sleep.

When children are dependent on medical technology — like ventilators, IV nutrition, feeding
pumps and home dialysis — and require round-the-clock nursing interventions, our system
struggles to provide that care outside the four walls of an institution. In institutional care, the
system seamlessly provides equipment, supplies, medications and care for kids with complex medical needs. By contrast, bringing medically fragile children home is a do-it-yourself project
for families. Our system can do more to make the transition to home care smoother, and to
make sure children have real access to care at home with their families.

Spending time in acute care hospitals may be unavoidable for these children when they receive
treatments that can’t happen anywhere else. But in many situations, we could do more to allow
these children to stay at home, instead of being forced to live in institutions that provide
medical care. Our children and families deserve better.

Jennifer McLelland has a bachelor’s degree in public policy and management from the University of Southern California and a master’s degree in criminology from California State University, Fresno. She worked for the Fresno Police Department in patrol for eight years. She is currently a stay-at-home mother and paid caregiver through the In Home Supportive Services program.  She is active in advocating for disability rights and home- and community-based services.

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