I watched the technicians install the tiny car bed in the backseat beside the car seat that would hold his twin sister. They secured the portable oxygen tanks and settled my son into place. We were finally going home after what felt like a lifetime in the hospital. Months earlier, a brain hemorrhage had nearly killed me at 30 weeks pregnant, forcing my twins into a world they weren’t ready for.
As we pulled away, I glanced back at my son. His feeding tube and oxygen cannula rested against his cheek. I should have felt relief. Instead, I felt terrified, still recovering from my own brain injury, living with double vision and a form of exhaustion I couldn’t even describe. I had no idea that surviving the hospital was only the beginning, and that no one
would hand us a road map for what came next.
My son had suffered a massive stroke shortly after birth, leaving him with cerebral palsy and hemiplegia. Years later, he was diagnosed with drug-resistant epilepsy. Children like my son represent less than 1% of children in the United States, yet account for more than 1/3 of pediatric healthcare spending. Our calendar soon filled with therapies and specialist appointments across two children's hospitals. Every specialist added another appointment to that calendar. None told us how to wade through it all.
'We didn't understand the full scope of what was available'
Research shows 68% of families of children with medical complexity report unmet care coordination needs nationally, compared with 40% of families whose children are less medically complex.
Our pediatrician referred us to the Early Start Program through California's Regional Center system, the state's early intervention program for infants and toddlers with developmental delays. That system serves nearly 500,000 people through 21 regional centers statewide, yet navigating it remained one of our biggest challenges.
At the time, we didn't understand the full scope of what was available. Early Start felt like a beginning, but no one explained what came after it ended. At 3, we were told our son would transition to the school district, so we focused our energy there. This led to more appointments, more assessments and still no road map.
When we moved to a new town, I asked our new pediatrician if someone in the practice could help us understand what services we might qualify for. I was told they didn’t have anyone in the office that specialized in this and we forgot about it because we were drowning in responsibilities.
We are highly educated, but knowledge wasn't the barrier. Capacity was. Families of children with medical complexity spend a median of two hours a week just coordinating care, on top of 11 to 15 hours of direct home care. More than half report a family member had to stop working because of it.
'She gave me a road map'
We learned about an intensive therapy program at the Napa Center in Los Angeles: Three weeks, five days a week, four hours a day, not covered by our insurance until we fought for a gap exception. We relocated our family so he could participate. It was some of the hardest parenting I have ever done.
We returned for three years. The first year, I barely spoke to anyone. The second year, I opened up. That decision changed everything.
In the break room, I met Mihaela King. She was a mother of four. Her son was also a twin with cerebral palsy and epilepsy. She understood not just the medical complexity of our lives, but the exhaustion, the isolation, the constant feeling there was another question we should be asking. She wasn't a case worker. She wasn't a coordinator. She was another exhausted mother, doing a job the system should have already done for both of us.
She took me under her wing and told me about programs I never knew existed: In-Home Supportive Services (IHSS), Regional Center, Medicaid waivers and the Self Determination Program.
But what she gave me was more than information. She gave me a road map. Without her, I don't know how long I would have lasted. California invests billions annually in developmental disability services, and I am grateful to live somewhere that invests this much. But investment without connection is its own kind of failure. Families here are still authorized more services than they receive, a gap that runs even wider for Black and Pacific Islander children specifically. If California, which invests more than most states, still cannot reliably connect families to help that exists, other states are almost certainly doing worse.
'A mother becomes the navigator'
A mother becomes the navigator. It is almost always a mother, not because fathers and partners aren't present or trying, but because the unpaid work of connecting the dots of care is treated as instinct, something we're expected to know rather than something any system was built to provide. Every professional we saw treated our son. Not one helped us hold the rest of it together. That job fell to me, and to Mihaela, because no one else claimed it.
If you are one of these families, before you leave the hospital, ask who your care coordinator is, by name. Write it down. Don't let silence become the default you accept. Build community around your child and find your Mihaela.
No family should have to rely on asking the right question at the right moment or meeting the right mother in a break room. This cannot be left to state agencies alone. Hospitals, pediatricians and specialists who fill a family's calendar are part of a disabled child's health journey, and they let families run off the road. They should be required to help chart the course, not just fill the calendar. That means enrolling qualifying families in coordinated care before discharge, in every state, so that connecting the points on that map is never left to chance, or to exhausted parents doing it alone.
Danielle (Dee) Stephens is a mother, stroke survivor, a communications leader and a disability advocate whose family has spent years navigating the complex healthcare and disability systems after her son was born with cerebral palsy, hemiplegia and drug-resistant epilepsy. She lives in Northern California with her family. Learn more about her here.
This article originally appeared on USA TODAY: My son has cerebral palsy and epilepsy. No one gave us a road map
